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Aspergers and Sensitivity to Touch

Question

My eight year old son was diagnosed with aspergers syndrome two years ago. He has major trouble wearing anything but basketball shorts and very soft t-shirts on a daily basis. Is it wrong to force him to wear things that he doesn't like? I forced him to wear jeans and a dress shirt for picture day at school and it was horrible. I don't know if I'm doing the wrong thing by forcing him.

Answer

I wouldn’t say it is wrong  …inconsiderate would be a better term. A common thread discussed by parents with Aspergers (high functioning autism) children is sensory issues. These children can have either Hyper- or Hypo-sensitivity. Some of them even express the sensory issues from birth. The sensory issues can be specific to one sense or across several senses.

Examples of hypersensitivity:
  • Touch: Does not like touch (especially when unexpected); may be sensitive to textures or different fabrics
  • Taste: Easily gags due to texture or tastes; a "picky" eater
  • Sounds: Showing great discomfort to loud noises such as fireworks, movies, or parades; easily distracted by sounds
  • Smells: Avoids the meat aisle in the grocery store (too stinky); detects odors that others may not even notice
  • Sight: Bothered by bright lights

Children and Aspergers are anecdotally said to be hypersensitive to touch. They will often report that some – or most – of their clothes are “tickly.” Aspergers kids with touch sensitivity are often in the state of “red alert”. Many of the sensations that we take as meaningless, they view as a physical threat. Kids with touch sensitivity also experience tactile sensations differently than others. Something that we experience as smooth can seem to them painful. The result is that often their behavior is affected.

To give you an idea of how Aspergers kids experience the world, imagine the feeling you have when someone scrapes his nails along a blackboard, or the feeling you have when you cut your nails too short. This is how a touch sensitive youngster might experience a warm caress. There is a difference, however. When you cut your nails too short, it bothers you for a while, but the discomfort goes away. If a child is touch sensitive, the discomfort never goes away.

The Aspergers youngster may not be able to wear his dress pants because the feel of wool is too uncomfortable to bear. He may not be able to concentrate in school because he is enduring the hardness of the chair or the rush of air blowing on him from the ventilation system. He may be quick to lash out when another child bumps him because of the perceived attack by the other child. He may be unable to make friends because of the fear of being bumped prevents him from interacting in a normal fashion.

Here are some of the things that may indicate that your Aspergers youngster is touch-sensitive:
  • Craves certain sensations the he finds calming, like rocking or firm pressure
  • Fights irrationally when you are combing or shampooing his hair, cutting his fingernails, or brushing his teeth
  • Gets distracted because of the things that are touching him are bothering him
  • Insists on having certain textures of clothing
  • Makes you cut all the tags and labels out of his clothing
  • Reacts strongly to sensations that most people don't notice
  • Soles of feet, mouth and tongue are usually most sensitive areas
  • Tries to avoid tactile experiences
  • Won’t eat certain foods because of their texture

Treatment—

Treatment of touch sensitivity is usually done under the direction of an occupational therapist. If you feel that your Aspergers youngster may have touch sensitivity, you should first try to confirm the diagnosis by going to someone who is trained in diagnosing sensory integration problems. You should first consult your doctor with your concern and try to get a referral to a “Pediatric Occupational Therapy Service” for diagnosis and treatment. They will manage your Aspergers child’s treatment plan and teach you what you can do at home to help your child.

What Can Parents Do?

A common approach is to spend the time and money needed to find alternative fabrics and styles of clothing. Tolerance for fabrics will vary from child to child. So take your Aspergers son or daughter with you to the clothing store and have him/her experiment with different clothing items. For each shopping excursion, plan on spending at least two hours. You may have to go to several stores. And if you find only one item that your Aspergers child can tolerate per trip – consider yourself very lucky!

Help for over and under-sensitivity to tactile experiences:
  • Cook meals with different size pieces of vegetables and different texture foods.
  • Encourage and offer tight squeezes and hugs.
  • Encourage gardening and patting down soil and working with sand.
  • Provide clothing the child is comfortable in.
  • Supply a bag of different textured items such as feathers, leather, silk, tinfoil, sandpaper and sponge and encourage the child to rub them and feel the different surfaces.
  • Use tactile-rich decor such as cork, sisal rugs and furry blankets.

Other Sensory Issues—

Help for over and under-sensitivity to oral experiences:
  • Encourage bubble blowing.
  • Ensure the child is on a multivitamin to make up for any dietary deficiency.
  • Offer chewing gum, lollipops and hard candy.
  • Supply simple wind instruments such as recorders and harmonicas.
  • Supply straws or cups with built in straws.

Help for children with auditory sensitivity:
  • Expose the child to a variety of music and see which is most enjoyed.
  • Supply earplugs or earmuffs when at a loud event or sports match.
  • Take the child to quiet places on outings such as the library, art galleries, coffee shops and parks.
  • Teach the child how to cope with or move away from loud noises such as a passing train or screaming children.

Help for children with olfactory sensitivity:
  • Don’t bring home magazines with perfumed pages.
  • Give permission for the child to leave the room if an odor is too strong and try and make the same provision at his school.
  • Supply a small vial of a perfume the child likes that he can sniff if he needs to.
  • Teach a child to breathe through his mouth to minimize unwanted smells.

Help for children with visual sensitivity:
  • Build 3D models.
  • Do jigsaw puzzles with the child.
  • Encourage activities where the child sorts items into shapes and sizes.
  • Work on collages.
  • Work with an ophthalmologist as different color and strength lenses can help.

It is helpful to get the child assessed professionally and then integrate the occupational therapist’s suggestions into everyday routines.

Preventing Meltdowns in Aspergers Children


COMMENTS:

•    Anonymous said… Do any of you have trouble being touched? For me, around my belly, I am incredibly sensitive... It tickles so much it hurts... My girlfriend can barely touch me and it nearly broke us up...?"
•    Anonymous said… Do any of you have trouble being touched? For me, around my belly, I am incredibly sensitive... It tickles so much it hurts... My girlfriend can barely touch me and it nearly broke us up...Interesting, I hate being touched around my fits. Is there a study on oily-skin types and sensitivity? My cutaneous sinsitivity considering my skin type is number 3[darker than a nordic ike you) or an an average white but lighter than a mediterranean european], I burn and may tan under UV: Heat and cold - I prefer cold. epidermis and dermis: almost no sensibility.  I think, maybe it has something to do with your endocrine system(whatever you say in english, mah english too bad), it may interfer in the blood vessels of your epidermis(the sensitive part of your skin), also consider that your muscular mass and your adipose can change your skin elasticity. I have high triglyceride rates in blood and I follow a diet(brazilian) close to the mediterranean diet -veggies, fruits, blah-. So I sometimes I am bleeding and people say "hey, she is bleeding!!" and I tell them: "where exactly?" . Low sensitivity compared to most of people I know.
•    Anonymous said… For all of you who have kids that are very sensitive to clothes, etc. I highly recommend them taking the supplement 5-htp. (sold in health food stores). One 50 mg. capsules daily can be broken open and mixed into a small amount of apple sauce, yogurt or the like. You will notice a diffence in your kid in about a week. Their mood will change as well as the sensitivity; all for the good!!! My 7 yr. old daughter has been taking the 5-htp for 13 months and I can totally tell a difference when she misses a dose.
•    Anonymous said… hmm... hadn't occurred to me that might be an effect of autism... but recently I've been really put off by our downstairs neighbors... particularly the issue is that all 3 of them smoke -- in their apartment -- constantly... There's probably not a one of them (the youngest 14) who doesn't go through at least a half a pack a day. So walking into their apartment is a challenge for me. When Tiff is down there for 20 minutes or so and comes back up, she reeks and I have a tough time kissing her because she tastes like ash to me. I used to be sensitive to smoke as a kid and thought I had outgrown it, but I guess more likely I just haven't been around it as much.
•    Anonymous said… I also experience it. For me it's pretty much my entire body. I find warm water (showers, hot tub, etc) desensitizes me.
•    Anonymous said… I am a therapist, and I work with kids with Autism and Sensory Intergrative Dysfunction ages 3-7. I am starting a clothing line for kids who have extreme sensitivity to clothing textures and cuts, and for parents who want to stop fighting with their kids about clothes, and who want to find clothes appropriate for varied occasions, that their kids will actually want to put on (and keep on!). I have worked with numerous kids who demonstrate challenging behavior as a result of being highly reactive to the touch and feel of their clothing. I have been working with parents, kids, designers, and cotton experts/manufacturers to try and design clothing that will "work" for all kids.
•    Anonymous said… I don't mind the (mild fall) early-morning cold most of the time, which is all well. But I'm terrible during the solstices. Whenever I feel a ball fly past my face, I can feel the air rush by my head. Yet, if a ball actually hits me, I'm fine unless it's a headshot. It's very odd. I'm very odd.
•    Anonymous said… I feel your pain. I have a 7 year old boy. In all other areas he is very typical. However, we have been dealing with this clothing issue for years. First it was underwear. Then socks. Shirts with sleeves. Shoes ... oh my gosh! He always has an issue switching from pants (in the winter) to shorts (in the summer). Then, once again when the seasons change. I have found that he likes boxers best for underwear. We still have a problem with socks and shoes. I found socks that he will wear but Costco stopped carrying them and I am unable to find them anywhere else. We are currently playing Baseball (his 3rd season) and the uniform is such an issue. Unfortunately I am not able to accomidate his "clothing" issue because the uniform is standard. I have become so frustrated that I have contumplated not letting him play. He gets into total "freak outs" over his unforms. It then ripples down onto our entire family. I am just so tired of dealing with it. I truely believe that certain clothes bother him, but I am at a loss of how to constantly accomodate him. I looked up tactile disorder and is has so many other issues that I don't believe that he has that. Do you have any ideas that you could share to help ease the tension and "getting dressed time"?
•    Anonymous said… I hate having anything wet on my face, even just a little. It took my fiance a while to understand why I wiped my lips after he kissed me. I'm severely ticklish. I can't stand the feeling of having wet hair on my hands. At the same time, when I'm touched just right, I get this intense, druglike feeling of euphoria that I can't put a name to. It reminds me of Soma, a prescription muscle relaxer. I can also get this feeling from visual stimuli. I used to have a high pain tolerance. But years of being on SSRI's have upregulated my pain receptors. Now, everything that used to kinda hurt can hurt so bad that it causes anxiety and panic attacks. I also cannot stand the heat. I'd rather be cold than hot, because it's easier for me to get warm than it is to cool off.
•    Anonymous said… I hate high pitched sounds, such as the screech of sound equipment being adjusted and creaking metal joints that need to be oiled. Police and firetruck sirens are also hard for me to deal with. Fortunately, they don't last very long. The Bank of America ATMs in Arizona high high pitch beeps when I push the buttons to enter my ATM code, and I can't stand them. I repeatedly ask the employees to adjust the sound, but they never do anything. Sigh. The sound of chewing bothers me when I focus on it. Fortunately, other sounds tend to drown out that noise, so I hardly ever notice it. I also mainly eat alone, most of the time.
•    Anonymous said… I have had the same problem with my kid since she was 2; she is now 5 and will cry for 1 - 5 hours each morning when she gets dressed. The socks have to have the seam right on her toes with no bumps. The underwear tickles. Her panties are too big..... too little. The seam in the back is crooked. etc. etc. etc. I am about to go crazy. It is such a relief to read that other kids have the same problem..... that I'm not just crazy even though I feel that way. We can not afford to buy any thing new just because something "tickles." I am at the end of my rope. I have tried telling her that it is not the clothes, that it is just in her mind, but she doesn't act that way. It is something very real to her. Something I cannot fix. Even at bed time, the blankets can't have any wrinkles, and the pillow has to be just exactly right (which doesn't happen sometimes!) It is such a relief to read all the other entries; even if it doesn't solve the problem!
•    Anonymous said… I have read that people with AS can become quite agitated over little repetitive sounds in the environment that other people can tune out. The ticking of a clock is one example of this. I find that for me it's chewing noises. I have yet to meet a single other person who is as bothered by them as I am. Often I can't even eat in the same room as other people for this reason. It also limits what jobs I can hold. Perhaps that's why I am making a career out of call centres - if it's your job to talk, usually there is a rule in place that you can't be eating anything at the same time. But sometimes people will stick gum in their mouths anyway. Others don't seem to even notice, but to me it's as loud as thunder. It's even affected my schooling - inevitably there will be at least one person in every classroom that will be chewing loudly on a daily basis. One class I quit attending; the other I actually failed because I would come home so exhausted from the stress of having to hear that all the time that I didn't have any energy left for homework. Even when I'm on the bus I have to select my seat based on who is chewing - I'll usually sit ahead of them so I don't have to see them, and I'll put my music on so I don't have to hear them.  I am on an anti-depressant called Mirtazapine (generic Remeron) which helps to calm me down a little but it doesn't quite take care of everything. I have been like this for at least 10 years, so the best I can hope for is to be in situations where things are quiet and controlled.
•    Anonymous said… I have to wash new clothes before I wear them...something about the chemicals bugs the *CRAP* out of me.
•    Anonymous said… I seem to have a high threshold for pain from scrapes abrasions and punctures but a low threshold for burns & scalds. Some parts are strangely sensitive. I'd swear my mother was attempting to saw my ears off with that comb...
•    Anonymous said… I think I have a good pain tolerance. However, it really hurts when I get my back patted hard, like my mom does to me..Don't like having my back touched at all.Strong back muscles, but the nerves ache..
•    Anonymous said… I think I have a good pain tolerance. However, it really hurts when I get my back patted hard, like my mom does to me..Don't like having my back touched at all.Strong back muscles, but the nerves ache..im the same way. my dad got into the habit of patting my back, usually the small of my back, and it really hurt!! i had to finally explain to him that it hurt and i didn't like it. also, rubbing my neck or shoulders... it hurts!! lightly rubbing is fine, but the way my dad does it randomly, i have to be like "owowoowowow" to get him to realize he's hurting me. i remember once, my aunt, who was a masseuse at the time, went to rub my shoulders without any warning, and it hurt so bad, i cried!! she was really surprised and just thought my muscles were really stiff. but, i was only stiff because she had done it without any warning. not that i would have let her do it even with warning!!
•    Anonymous said… I used to get sick on long car rides because of the gasoline smell (getting refules was the worst). What you said about perfumes really resonates with me. Most perfumes are too strong and too sickly for me. Another major thing is cigarrette smoke. If I smell it, I start to gag and my breathing closes up. Hmm I wonder if that's an allergic responce now that I think about it.
•    Anonymous said… I'm extremely ticklish... I also get scared around lighters and hot steam hurts me more than it seems to hurt others. This might be some strange muscle thing, but the odd time when I wash up and stuff like that my arms ache real bad... and when I write. I don't think I'm weak as such, but it seems I'm very sensitive and my muscles can't seem to cope very well sometimes. I don't know why. And when working, I might feel exhausted and my body reacts badly with the heat... just when thinking about it I guess... I don't know what it is. In such circumstances my back might sting a bit too. I don't know what causes all this... I haven't had to work as such for a while though so I haven't felt any of that for a fair while.
•    Anonymous said… im not sensetiv but i have a reaction if somebody touch me i dont exspect it.
•    Anonymous said… My greatest problems regarding hyper-sensitivity have been with smells, especially when it comes to perfumes and chemical smells. When I was a child my mother, who could not afford a car, would take me everywhere on the bus. The smell of the diesel exhaust would make me absolutely sick and I would require a great deal of time to recuperate from the ride. This made my mother severely irritated with me. To make matters worse, there were many times I became so nauseated by the fumes I threw up when we had reached our destination. One such incident took place in the center of the downtown mall. (The whole thing is quite entertaining in retrospect.) To this day I cannot stand certain perfumes that women wear. If I cannot get away from the smell, such as when I am at work and trapped in the same room with a particularly fragrant person, a massive migraine inevitably results. Fluorescent lights have had this affect on me, and, when I was a child, the colors yellow, and brown, especially when combined, made my head hurt. I could go on and on…however, on a more positive note, it does seem that my hypersensitivity has improved, or lessened, with age. I am not as sensitive as I was as a child.
•    Anonymous said… My kid has a terrible time with seams in her clothes. She used to have meltdowns every morning. It was a nightmare. Socks were the worst. She would put them on and tear them off because the seams bothered her. The seams had to line up perfectly on her toes. After so many morning melt downs I finally found smartknitkids socks online. They are seamless and didn't bother my kid. It is so amazing! We are still working on the clothing seam issues, but it seems to be better. Now I'm looking for seamless underwear. Any suggestions?
•    Anonymous said… My kid is four and has a huge clothing sensitivity. Her twin brother and older sister also have a mild case of it but nothing in comparision. I am constantly using sensitive lotion and even baby oil in their tub to try and help. I have removed all tags and decals, etc. and even tried undershirts. I have not changed my soaps and use senstive "everything". She sometimes has to change 7 times before leaving the house in the am. I am exhausted. Something that she wore yesterday will not be good tomorrow. I am allowing her to choose as it is worse if I pick the clothes. Underware is another huge problem. Most days she wears shorts or pj's if we are at home. HELP!
•    Anonymous said… Scent has always been an issue for me. Less so in recent years. I'm now able to walk down the detergent isle of a grocery store without nearly gagging like I did when I was younger. Perfumes and colognes are still a bit of an issue for me. Even (and perhaps especially) unscented commercial cleaners were a big problem for me as a child. I can remember walking into a bathroom in any school, store or hospital when the cleaning crew had finished within 30 minutes or an hour before me and getting an intense headache from the smell of either bleach or amonia and finding it difficult to breathe. It was like an invisible elephant that only I could see -- nobody else had a problem with it -- I was basically incapacitated by it.
•    Anonymous said… This does seem to be a common thing. I am not all that fond of being touched, anywhere. Having said that, if someone touches my head, it triggers my "fight or flight" reflex, in a big way.
•    Anonymous said… This is so interresting. We all so similar in our quirks, having not been similar to anyone much, it's funny. My mom spent time being anoid with my foibles. I try and cut my son huge slack because of that. He hates that styrofoam sound, a lot. Slurping or squishy chewing sounds have always irritated the hell out of me. In the Oasis guide I was surprised and amused to read that out of all the posible annoying sounds that aspies percieve, chewing was the number one irritant. Colors...I get it, but I was drawn to one...I can't explain, it just is my color, always was...it speaks to me or something. Deep red. I see it and I feel complete in some way.
•    Anonymous said… Very sensitive skin here, especially in winter. A hot bath using a firm brush usually cures it (kind of drowns out the irritating sensation), otherwise I'd be itching all the time. Nothing organically wrong, if I don't scratch, the skin looks fine. But the slightest touch can set it off. I was once happy enough in a small circle of friends - we used to throw their arms round each other all the time and I didn't mind - quite the reverse. But that was a long time ago, and these days it's rare, I never initiate it (except with my partner when I remember), and when it's done to me it's too much of a shock, so they've tended to only try it once. I'm not rude about it and don't push them away in any overt way, but they seem to pick up that they've goofed. Nothing to do with sensitive skin though, I think I just need forewarning, and these days there doesn't seem to be any rhyme or reason why people do that with me, so it's usually a complete surprise and I'm not ready.
•    Anonymous said… Wow...I had no idea this was so common! And yeah I know what you mean about not finding anyone similar to you and then suddenly in this tribe it turns out to be such a common ground. I don't post here too often but this tribe means so much to me...so very much. It's so validating. I think about these discussions often.
•    Anonymous said… yeah mel, my daughter uses her headphones regulary for this reason too, it really helps. we have a fountain right in front of the house.. and the water running is very irritating to her. we also have a good supply of ear plugs, which have helped us out in unexpected situations. So far my daughter as been able to avoid medications.. and I am glad of it, as I think it is hard to come off them once started. I myself have had to resort to anti-depressants for a short while, and just after a couple of months I found, that when not taking them, I was very shakey dealing with my own emotions. I had been buffered, and already I had forgotten how to deal with them myself.. so the "weaning off" was difficult, even though I was told that they were reasonably mild antidepressants, and I had only taken them for a couple of months. So I would recommend to anyone to get off them asap, and if you have taken any psychoinfluencing drugs for a while, to wean yourself off them slowly and with great care,- expect to feel shakey until the hormones can organise themselves properly again, and make sure you have support from friends and doctors/professionals for that bumpy time I have had good sucess with tuina, herbal TCM and western herbal medications.. which seems to work for me. for my AS daughter, for her it seems to be the most important that she has quiet periods in the garden, sitting by the pond, studying newts and insects.. stroking the cats helps too to desensitize.
•    Anonymous said… Yes, this is a common trait amongst a lot of AS people. I have a patch of skin above both hip bones that if touched lightly by another person will actually cause me to convulse. Many of us have a strange disproportionate pain threshold. I've been run over by a car before (note: not hit by a car, the tyres went over me and I was dragged) and that was fairly painless. I've also had surgery that left me with a big scar across my throat and staples holding me together, I never asked for pain relief and went home the same day - to the horror and amazement of hospital staff.  But if I have a migraine I weep like a kid. The feeling of something brushing across my top lip and even having cold objects against my skin are excruciating to me. It's all screwey and upside down.
•    Anonymous said… I completely identify with the smell and sound issues both. As a child, I would get horrendous headaches when it would rain during the night and in the morning sun, fumes from the tarry steam coming from the streets would make me nauseous. Diesel fumes too. As for sounds, it isn't a particular sound that irritates me, but *any* sort of background noise becomes so overwhelming that I can't even hear someone talking to me a couple feet away. I have practiced reading lips just to help me make out what they're saying!
•    Anonymous said... As he matures he will choose to try new things with encouragement, because they want to fit in with their peers they become more willing to make changes. My son changed once he got to 16 because he desperately wanted a girlfriend and a teacher pointed out to him it would be difficult to attract one if he didn't change his style of dress. He consults his sister on which shirts and jeans to buy and takes great pride in his appearance now he is 18
•    Anonymous said... Body brushing before putting on clothing can help-this helps with desensitization...speak with your child's occupational therapist about it.
•    Anonymous said... But at the same time, if the kids aren't thrown out of their comfort zone every now and then, they'll never adapt.
•    Anonymous said... For 3 yrs our son could only wear hanes tagless sweat pants and tops, the sensation of anything else was painful. Eventually he just slowly adapted and now wears jeans , wool coat, hats, everything. Haircuts or brushing his hair might as well had been torture, hang in there it may get better.
•    Anonymous said... He could not care any less if his clothes match or inside out and backwards. If I didn't make him I don't think he would ever change clothes
•    Anonymous said... I guess I would relate this to a pair of shoes that are too small. If I was forced to wear a pair of small shoes if be miserable by the end if the day. My daughter is 10 and is sensitive to clothing also, so if it makes him comfortable and isn't breaking any rules embrace it as something small that you have control over to make his day better.
•    Anonymous said... I have an 11-year old son with high functioning autism and that's pretty much the only thing he'll wear! It's a fight when we go to weddings or any other occasion where he can't wear his basketball shorts.
•    Anonymous said... I have an autistic daughterso I do understand some of these difficulties, however I also have a son who has really severe eczema and can only wear certain clothes because of this. I just wanted to point out that clothes are only to protect our modesty and you as his parent should do what you feel is the right thing, do not be forced to dress him a certain way for societal reasons, do what you feel is right for you and him x
•    Anonymous said... I think exposure-desensitized programming is key. Make them wear for a minute, increase to five min a day and so on and so on.. We have to do this with tights, pants with waistbands, etc...we have more success with daily small bursts building up to an event
•    Anonymous said... I wouldn't make him.I found life got allot better for our family when we stopped trying to make our son change and we changed our ideas to make him more comfortable.
•    Anonymous said... I wouldn't try and get him to wear things he doesn't like the feel off, I have a son with aspergers and he is the same but it is actually painful for him to wear rough things because of the sensory issues that people with aspergers usually have, it may actually hurt him.just my opinion though everyone is different
•    Anonymous said... It's like making someone wear a "hair shirt" from olden times. It's uncomfortable and physically upsets them. Parents need to worry less about their children's clothing, than about their comfort level and ability to get through the day with fewer issues and problems. As long as they are covered and presentable, and clean, worry about the bigger issues they are facing in life.
•    Anonymous said... Mine is the same way and I let him. In church days he will dress but it takes me awhile and a lot of shopping to find clothes that are "soft" enough with little seam exposer etc. I figure he deals with enough that he shouldn't have to deal with feeling like he has claws all over his body all day. As long as he's clean and his clothes are clean and not worn out. We do it. That's all he has except maybe 1 pair of pants for church an a few shirts. Picture day. Well I want a pic of who and what my kid is not what he "should" be. hope that helps.
•    Anonymous said... mine was the same, until he was about 9, only cotton shirts, sweat pants and underwear that were 2 sizes to small. He has out grown that now. Didn't bother me what he wore and now he'll wear anything except things with to small of a neckline, says its feels like its choking him.
•    Anonymous said... My fellow doesn't have extreme sensitivities but also prefers less clothes. Part of it is also habits and each time we get to winter it's a tough process to get him to change to warmer clothes. Sometimes I do wonder if I should push it but if I don't he will get even more entrenched in his position and he will never ever wear long pants for the rest of his life. So for the sake of challenging his inflexibility I set rules which are written on the wall. Under 16 degrees must wear long sleaved top if under 16 degrees for the day must wear long pants. Then I use incentives and consequences. After the first week then he just does it.
•    Anonymous said... My son is 10 now. He has high functioning autism /Aspergers. He only want to wear basketball shorts, t shirts and sweet pants with no tag. He also would wear the same clothes for months if I didn't make him a to change. He used to love bath but not now. Some days I tell him that his shirt is on backwards or sometimes it's inside out. Sometimes it doesn't match. I have learned to pick my battles. He is loved with no limit. I make him change his cloths at least every other day. The bath twice a week is a dream come true. Sometimes his legs hurt and that's how he deals with pain. When he is in there I try to soap him up. That's I battle. I end up wetter than him and he is the one in tub. Water is everywhere. The mismatch clothes,being backwards ect. Is not worth the fight. He is homeschooled so that helps.
•    Anonymous said... Pick your battles. My 9 yr old aspie is at the same stage. Our school year just started and I'm asking him to wear jeans or something other than athletic pants 1-2 x per week. With advanced notice - like on Monday I say on Wednesday can you wear these pants? Then he knows its coming up and he is handling it much better. But if its not worth the battle cause you probably have 1,000 other battles let this one go.
•    Anonymous said... Same here. I created a plan with his bha. If I don't think he is wearing something appropriate then I get to help him pick what to wear. Otherwise he can wear what he wants. I also give him choices as to what he can wear. The best way I have found to do that is to take him to the store (knowing what we are going for exactly) then let him pick. I found its a less forceful way of getting him to do what I want.
•    Anonymous said... some of the same problem. certain materials just really bother their skin.
•    Anonymous said... Unfortunately your son won't be able to wear basket ball shorts and soft shirts for the rest of his life. There will come a time when he has to wear other fabrics, such as when he gets a job. My son also hate the feel of some fabrics and I only really make him 'dress up' for special occasions. I explain why he needs to wear these clothes and let him know that he can get changed as soon as is possible, I usually give him a time that we will be home and if he complains I remind him that there is only how ever mins left for him to him leave it on. He is nearly 11 and it's gotten a lot easier to get him to wear things other than track pants and t shirts.
•    Anonymous said... Unfortunately, conformity will be one of the biggest obstacles our kiddos will face in their life. We, as parents, are left with the heart-wrenching decisions of when is the right time to "make them" try new things or "make them" do what they need to do. We don't have this as much with clothes as we do with food. I hate having to make my kiddo do anything he doesn't like but the fact of the matter is that we have to...slowly, but surely, we have to... this world is not educated enough or equipped to understand our kids. Just like we have to teach them social skills and facial expressions, we need to teach them to make the best of situations. For example, if you allow him to continue wearing only this clothing, what will happen when school no longer allows it? Or, when he is older and has to wear a uniform to middle school? Evidence shows that teaching our Aspies conformity at a younger age will only help them assimilate later on...
•    Anonymous said... Wow out son is the same way and also hates blankets, it's a sensory response
•    Anonymous said... Yep hair washing, hair cuts - nightmare! He wears different clothes to the other kids at school that is comfortable for him, but from time to time I have "forced" him to wear jeans - he is 8 now and I do think at some point he needs to learn to deal with discomfort. Once they are on he forgets all about it and Carrys on with what he is doing.
•    Anonymous said…  I feel we need to be flexible when it comes to our aspies dressing. Unless he absolutley has to dress up for an occasion I let my son wear what he is comfortable with as long as it is respectful! My son is 17 and likes tshirts and hoodies (only certain brands) that have to be a certain size (he likes large sizes even though he is slim and average build). He prefers "skinny" fit jeans and hates and refuses wearing shorts because he can't stand showing his bare legs or reveal what he feels is "hairy legs"! My son has a hard time wearing a bathing suit because he has low self esteem and body image.
•    Anonymous said…  Our son wore a button up green striped shirt sleeve skirt, a green striped tie, and chose a purple and blue universe background. The school photographer told him it wouldn't match. When we got the pics our 9 year old took one look and said,"huh! I told that guy (the photographer) I'd look good!"
•    Anonymous said… A long school day of dealing with the stress of social interactions is maybe not the best time to add in the discomfort of unfamiliar clothing. Schedule a portrait outside of school, someplace quiet, and let him wait until he gets there to put on a special outfit.
•    Anonymous said… All of my kid's clothes are hand-me-downs and have been broken in really well. He chooses UnderArmor shirts, Jeggings and soft pants, PJ bottoms. He really likes his Boy Scout uniform pants where the lower leg unzips, he can carry them in his backpack if needed. He will not wear jeans or Dickies. For a while he chose socks that weren't a pair, but kinda went together, one sandal and one shoe. Oh, and always his Fedora. Uniforms are not required at his school. He has worn the exact same silky button-up shirt for school pictures from Kindy through 7th grade, and he's upset that he won't get another year out of it. We do have certain rules if it's below freezing, and for special outings.
•    Anonymous said… Any tips for haircuts? My son's 15 and it's been over a year and his hair is past his shoulders. His sister is getting married in 2 weemsz, and that necessitates a hair cut. It's quite an ordeal
•    Anonymous said… Between the ages of 4 and 9 my son couldn't stand tags in his shirts or any restricting waist bands. I cut tags and Old Navy used to sell school uniform pants with elastic waists. I did what I could to make him comfortable and explained to school officials when they didn't understand. (He had to wear uniforms to school) He eventually grew out of it gradually. I still only buy tagless shirts. He starting wearing regular waistbands under his tummy. Now he can wear the pants at his natural waist. It took some time and I didn't necessarily push, but it did happen. Keep the faith. Wishing you the best.
•    Anonymous said… forcing them to do anything just makes things worse, getting agitated and anxious increases their sensitivity. As they grow older and become aware that they look different to others but want to look the same, then the change will come. My son was the same until he was in Y12 of high school. He went to a social event and was teased about not wearing jeans like everybody else. He wanted to be like them so much he was able to overcome the discomfort, now it is no longer a problem.
•    Anonymous said… From my experience with my 10 year old son, processing what we, as neuro-typical, don't even notice: sound, light, movement, temperature, etc is so much more demanding that it is exhausting. To then expect your child to wear something that will add to their anxiety is going to make them less productive during the day (think of a polo neck that is perhaps too tight around your neck, or shoes that hurt your feet). If you can help him reduce his frustration with as many things as possible (such as clothing concessions), he will have more energy to learn and enjoy life.
•    Anonymous said… I guess my perspective is this, how would you take it if your boss came to you and said your new uniform was a wetsuit whether you like it or not. A child's opinion is valid no matter how young they are. I'd try to find nice tee-shirts and soft shorts for him to wear and know that smile in that picture is genuine. Years from now when you look at that school picture this negative memory is what you'll think of... Which is better?
•    Anonymous said… I guess there is a reason he hates it. He is not doing it to be annoying. I have a merino thermal top and it's a but irritating to wear. I often can't wait to get home to take it off.
Choosing the softest and loosest clothes sound best for him. One idea might be to wear a soft tshirt under tops that have a texture he doesn't like.
With my son sometimes there's no choice so I have to get him to wear pants and he does get used to it. Then the next year for winter we go through the battle again and then he gets used to it again. It's hard for him.
•    Anonymous said… I had my son wear what he wanted but put a button down shirt over it. After pictures he could take the shirt off. Knowing it was temporary and that there was a comfortable layer in between made it work for both of us
•    Anonymous said… I never force my son with things like this he never does his button up on his school trousers ever for example! Choose your battles I say xxxx
•    Anonymous said… Imagine wearing a very itchy wool sweater all day in a hot room.... the feeling is very real to them - even if we don't feel it (or understand). That is what I have come to learn from my son.
•    Anonymous said… It's more important to teach him compromise. My own son hates socks for example. I insist he wears them to school because that's what expected, and for 'occasions' but on his own time he decides. It's the same for anybody - I don't like skirts so I don't wear them. As long as you teach him the social rules - a suit for a wedding for example, what he wears in free time is entirely up to him.
•    Anonymous said… It's not worth it. He's going to look miserable in the picture and come home more stressed than usual. My 9 year old is the same. It's hard. I get it. You'll likely never have the cute pictures of him looking like a little gentleman in coat and tie. You can still have cute pictures of him smiling and happy in clothes that he's comfortable in. There are other things; for his health kinds of things; that you are going to HAVE to force on him. Choose your battles wisely and limit the stress on both of you.
•    Anonymous said… Let him wear what is comfortable. Try to imagine wearing a Brillo pad sweater. That's probably how he feels and that makes it impossible for him to concentrate on any thing else.
•    Anonymous said… My 10 yr old is the same, won't wear jeans or doesn't like things with buttons, let him decide what he wears now, he preferes joggers and t.shirts or a jumper but again doesn't like wearing a t.shirt under a jumper, same with trainers, often has a melt down when I have to change he's trainers
•    Anonymous said… My 12 year old dd also won't wear anything jean related or anything with buttons. I"ve tried many times.
•    Anonymous said… My 15 yo rejects jeans. She says they are "cold". I've never understood it but I respect it. I buy soft black pants from Goodwill. She also rips out every seam in all her pants so there's that. And don't get me started on her lack of fashion sense. But who cares? I've seen other NT teens and they don't look much better.
•    Anonymous said… My 16 year old aspy still won't wear jean or anything navy blue.
•    Anonymous said… My aspie son went thru phases....only sweats, only jeans, now only carhos, no long sleeves, only v necks, nothing with inside sewing or stifness. He is now 19 and has grown into many different types of clothing now. Don't force them.
•    Anonymous said… My daughter dislike jeans, I don't make her wear them! She likes sweat pants and leggings
•    Anonymous said… My daughter wears leggings and the occasional stretchy jeans. It took alot of coercion to get her into jeans she still prefers leggings. There are fabric textures she absolutely will not wear. All tags must be cut out and if a seam is too large she will not wear that item either.
•    Anonymous said… My son also would only wear "soft" pants for the longest time-drove my husband crazy but I didn't care as long as he was making it out the door and to school. He started wearing jeans sometimes but usually with his basketball shorts or silky warm up pants or pj pants underneath. I think the layers were as much about the comfort of the material as the added compression from layering since sometimes he also layers lots of shirts.
•    Anonymous said… My son is 32. He hates button down shirts. Only wore one twice in the last 10 yrs. To both of his college graduations.
•    Anonymous said… My son is the same...will only wear basketball shorts and Adidas and Nike pants (that material) for Easter Sunday he wore jeans but that was the last time I could get him to wear anything else. He likes the comfortable feel of the material and hates the fabric of jeans.
•    Anonymous said… Perhaps I should have elaborated. when I said, "pick your battles maybe?" I meant, let your child wear whatever they want. Be it sweatpants, jeans, shorts or a pumpkin costume. Do what works for you and your child always.
•    Anonymous said… Pick your battles maybe? My "neurotypical" son won't wear jeans. Doesn't bother me. I'm not worried what others think.
•    Anonymous said… sounds like he has SPD - I wouldn't force him, but I would 'work on it' so he can learn to adapt and look into OT
•    Anonymous said… They actually feel pain on things that are rough. He will grow into it in about ten years.
•    Anonymous said… This is a battle you shouldn't pick. Clothing is personal. Find compromises. Look for lightweight pants made of softer fabric with an elastic waist band. Instead of a starched dress shirt, pair a soft t-shirt with a loose vest. Allow him to try things on with no judgment from you about how ridiculous you think his objections are - just accept that there are clothes he will not ever try. Encourage him to explain what he likes about certain articles of clothing rather than getting into a negative spiral about what he hates. Tell him about what you look for in your own clothing and why. This offers him a model for communicating about preferences without getting lost in a rant on what he hates.
•    Anonymous said… To control others in favor of our own desires is wrong in my opinion. He is a human being who should get to choose for himself, especially if his choices bring him comfort, regardless of how you feel he should be dressing. I mean you no disrespect by saying this. I just want to you realize that he should have the same rights as everyone else. For him, this in not about fashion, but about living in a way that is tolerable.
•    Anonymous said… we beg our son to wear nice things sometimes, we tell him we know its uncomfortable but if he could just ne brave and wear it for whatever reason. So hard! his school is really good and he is allowed to wear sport jumpers instead of formal jumpers. He puts together crazy outfits alot of the time, people stare or laugh but we reasure him that we love him the way he dresses and that h is comfortable being himself :)
•    Anonymous said… Why force? Pick something YOU hate. How would you feel if you had to put up with it all day? Accept your sons boundaries and preferences... There are more important things to argue about... And he'll be able to regulate himself better.
•    Anonymous said… With our children, not unlike neuro-typical children actually, there are battles to win and battles not to let go. The clothing one--unless I think he is going to do harm to himself over what he is wearing--I let it go. My son is 17 now. In the past we have had issues with socks, shirts with tags, etc. I now know what types of clothes to buy him, and often give him something out of his "comfort zone" and he usually finds it okay--as long as I don't push. The past two summers--he doesn't like to wear shorts. I buy him a few pair, just in case--and let him wear whatever. (If he gets too hot, he has them.) Tag-less shirts are great. :-) Wish you the best of luck!
•    Anonymous said… You're not wrong to force him to wear something other than his usual outfits. He needs to understand that there are certain occasions when he needs to buck up and just deal with things that aren't what he's used to whether it's clothing or food or anything else. He'll object a lot right now (as he's a child) but as an adult, he'll thank you.


Post your comment below…

What are your thoughts on the necessity of physical restraint in Asperger kids?

Question

My son was diagnosed with "Mild" Asperger's in May of this year …he turned 5 years old in June. I don't think I even want to know what "Severe" Asperger's looks like. I am not particularly impressed with the psychologist that diagnosed J___. His "Compliance Procedure" calls for physical restraint i.e. the basket hold procedure when there is not an absolute necessity for this procedure. (My personal opinion is there is never an absolute necessity), but the psychologist procedure says to use the basket hold to force compliance for a time out or whatever, if the child doesn't just follow those directions. To me this physical contact with a child that has sensory integration problems and Asperger's seems to only fuel the fire and cause the meltdowns to be prolonged. My observation is that allowing him to melt down on his own and try to protect him and the house while this is happening, we can generally get through an issue in 10 - 15 minutes and he is wanting a hug and telling me he is sorry.

I did in a counseling session with the psychologist finally agree after about an very tense hour that the basket hold may be appropriate if there was an immediate danger to person or property. Which the Dr also compromised his position for my son back to this limitation as well. My follow up to that is that it is still never necessary. I think I can keep a 40 - 50 pound 5 year old from doing too much damage to himself or others without escalating a problem. I am 6'4" and weigh nearly 300 pounds - at this point I can take whatever he's got.

What are your thoughts on the necessity of physical restraint in Asperger kids?

I have much enjoyed your weekly e-mails and online post video's etc. I am going to join Online Parent Support. I so much appreciate what you are doing.

Thanks,

R.


Answer

Restraining a child in the middle of a meltdown is a lot like hugging someone while they are having an epileptic seizure – it serves no real purpose. If the Aspergers (high-functioning autistic) youngster or others are in danger, then restraint is warranted; otherwise, it is nothing more than an odd parenting strategy with no real benefit (it’s a lot like “spanking” …it doesn’t really do any harm, but it doesn’t do much good either). When dealing with meltdowns, think in terms of PREvention. INTERventions are rather useless, because if the meltdown has already started – it’s too late!

While the meltdown is happening, remain calm. Anger and yelling only make a meltdown worse. Make everyone ignore what is happening and move away from the youngster. The Aspergers child does NOT like having these meltdowns anymore than an epileptic enjoys a seizure. Having others witness a meltdown embarrasses and humiliates the youngster.

The child in a meltdown is like a skittish horse, thus trust needs to be achieved. You are the person that your youngster trusts. After everyone else has moved away, have the person that the Aspergers child trusts get down on the floor at the same level as the youngster (a couple of feet away). Then speak to the child in a soft, somewhat slow, monotone voice. Ask him what's wrong, or what happened that made him upset. A normal voice may be too loud, and normal speech patterns may be too quick. Ask in as many ways as you can think of. He will eventually understand what you are asking and answer you. Be sure to leave plenty of time between questions so he doesn’t become even more overwhelmed.

The youngster will eventually move to a sitting position …you also need to move into a sitting position. Gradually move closer to the child and speak to him in your soft, slow, monotone voice. Try to attain eye contact, and once you have it, it's up to you to maintain it. Remember the eye contact is for your benefit, not the youngster’s – he doesn’t need it to communicate with you.

Once the child has started communicating with you, ask him if he would like to move to a safer and more comfortable place. He will usually want to be left alone once he has calmed down. Give him a safe spot in the house - and at school - where he can go to calm down. Make sure it's somewhere that someone can keep an eye on him, but gives him a sense of privacy at the same time. Give the youngster time to calm down. Every once in a while, gently ask the child if he wants to come out of his spot and join you, or rejoin his class.

Once he has come out of his spot, ask him if he would like to talk about what happened so you can fix the problem. If you're able to fix the problem, fix it – but don't make any false promises to fix something you can't. Be honest with your Aspergers child. A broken toy can be fixed, but a broken heart is much harder to heal.

Once he has decided to rejoin others, totally ignore the event; act as if nothing has occurred. If the youngster is at school, the teacher should inform the parent that a meltdown has occurred. Sometimes the effects of a meltdown can last all day, with the child being grumpy or unresponsive. He is usually trying to come up with a solution to the problem himself, and if there were witnesses (especially from his own peer group), he will be embarrassed, humiliated, and ashamed.

Punishment is not an option. If the Aspergers youngster could control these meltdowns, then they would never occur. I liken meltdowns to seizures and treat them accordingly. Punishing the child for a seizure/meltdown will only cause resentment and self-hatred. Remember: As the youngster ages, the meltdowns will occur with less frequency and with less severity.

Your biggest plus is a great deal of patience – use it. If you feel stressed out, you're perfectly normal in that regard!

My Aspergers Child: Preventing Meltdowns in Aspergers Children

Asperger Syndrome in Adulthood

Aspergers, a form of autism with normal ability and normal syntactical speech, is associated with a variety of comorbid psychiatric disorders. The disorder is well known to child psychiatry, and we are beginning to recognize the extent of its impact in adulthood. The article reviews the diagnosis and assessment of Aspergers and its links with a wide range of psychiatric issues, including mental disorder, offending and mental capacity. It also describes the broader, non-psychiatric management of Aspergers itself, which includes social and occupational support and education, before touching on the implications the disorder has for our services.

Aspergers comes not only with its own characteristics, but also with a wide variety of comorbid conditions such as depression, anxiety, obsessive–compulsive disorder, attention-deficit hyperactivity disorder (ADHD) and alcoholism, and relationship difficulties (including family/marital problems) (Tantam, 2003). It may predispose people to commit offenses and can affect their mental capacity and level of responsibility as well as their ability to bear witness or to be tried. The syndrome can color psychiatric disorder, affecting both presentation and management, for kids and grown-ups across a wide range of functional ability. Families have taken an active legalistic approach, alleging misdiagnosis and mistreatment and demanding clarity as to the relationship between Aspergers and other diagnostic concepts.

Characteristics of Aspergers in adulthood--

• Awkward interaction with peers
• Few/no sustained relationships; relationships that vary from too distant to too intense
• Lack of awareness of social rules; social blunders
• Unusual egocentricity, with little concern for others or awareness of their viewpoint; little empathy or sensitivity; problems in communication
• An awkward or odd posture and body language
• An odd voice, monotonous, perhaps at an unusual volume
• Lack of non-verbal communicative behavior: a wooden, impassive appearance with few gestures; a poorly coordinated gaze that may avoid the other’s eyes or look through them
• Superficially good language but too formal/stilted/pedantic; difficulty in catching any meaning other than the literal
• Talking ‘at’ (rather than ‘to’) others, with little concern about their response
Absorbing and narrow interests
• Obsessively pursued interests
• Unusual routines or rituals; change is often upsetting
• Very circumscribed interests that contribute little to a wider life, e.g. collecting facts and figures of little practical or social value

Seeking to describe the nub of this syndrome, Asperger coined the term ‘autistic psychopathy’ in 1944 to distinguish its innate social distance from that which develops later in schizophrenia; the concept was elaborated by van Kraevelen in 1963, Lorna Wing in 1981 and, most recently, Christopher Gillberg (Gillberg, 1998). There have been different interpretations of the syndrome and it has become included in the group of autistic-spectrum disorders.

This review focuses primarily on clinical issues: more academic aspects have been reviewed by Volkmar et al (2004).

Diagnostic classification—

As in autism, Aspergers shows impaired reciprocal social interaction and restricted, repetitive or stereotyped patterns of behavior, interests and activities. Unlike autism, intellectual ability and syntactical speech are normal. Wing and Gillberg place the emphasis on current presentation of normal IQ and speech, but ICD–10 and DSM–IV require their presence from early life. The latter presentation is unusual but was stipulated in order to define a disorder that would be an alternative to autism (rather than just a variant or subtype). It is debatable whether many of the cases described by Asperger would have met ICD or DSM criteria.

Gillberg and colleagues proposed a set of diagnostic criteria that approximate to Asperger’s original clinical descriptions (Leekam et al, 2000). Various symptoms have been suggested as distinguishing Aspergers from ‘high-functioning autism’ (i.e. autism without generalized learning disability) and the issue is clouded by the variety of definitions in use. When allowance is made for ability, there appears to be little real difference between the two except in terms of severity (Kugler, 1998; Gilchrist et al, 2001; Howlin, 2003) although self-awareness remains to be explored (Tantam, 2003).

Is the label useful?

Autistic-spectrum disorders comprise a group of disorders of varied form and intensity that fall on a dimensional spectrum of severity that shades into ‘neurotypical normality’ (i.e. the absence of an autistic-spectrum disorder). In clear-cut cases (exemplified by Dustin Hoffman’s character in the film Rain Man) people are helped by a categorical approach that gives a shorthand explanation of their difficulties. The validity of categorization is less clear for those whose milder symptoms put them near the ‘normality’ end of the spectrum as well as for those whose florid symptomatology is limited to only some of the key diagnostic areas. Even less clear is the position of people who, appearing to be superficially normal, have some of the subtle but disabling psychological deficits associated with autism, affecting executive function, attention, perception and comprehension. Closer examination often reveals a mix of specific developmental disabilities which, should they include language and social impairment, it is tempting to classify under autistic-spectrum disorder, sweeping in many eccentric and isolated personalities.

This desire to place all socially impaired patients somewhere on the autistic spectrum is offset by efforts to split off syndromes such as pathological demand avoidance (Newson et al, 2003) and semantic pragmatic (Bishop & Norbury, 2002) or multiplex developmental disorders (Towbin et al, 1993). Complicated by synonyms such as right-hemisphere or non-verbal learning disorders (Fitzgerald, 1999), the result is a confusing grouping of specific disabilities on which we impose recognizable constellations of clinical disorder (Willemsen-Swinkels & Buitelaar, 2002).

Where should we set the boundaries of a dimensional disorder? As with the personality disorders, there needs to be a diagnostic threshold: it might be the point at which the behavior causes distress (either to the patient or to those around) or significant problems in social functioning and performance, or at which it requires treatment. But can we fix a threshold in this way? The label of Aspergers may help the bullied schoolboy but be rejected when he becomes a mathematical star enjoying university: a functional distinction of permanent traits from a disorder that depends on the setting as much as the innate characteristics. That the presence of an autistic-spectrum disorder may make it difficult for the individual to acknowledge his disability complicates this concept.

Autism used to be considered a rare disorder with a population prevalence of about 0.04%, of whom 70–80% had a significant learning disability. More recently, the extended spectrum of autistic disorder gives a population prevalence of at least 0.6%, of whom 70–90% is of normal learning ability. So far, the evidence is that this shift can be explained by changing concepts and diagnostic boundaries as well as by the wider recognition of autistic-spectrum disorders rather than by any real substantial increase (Fombonne, 2003).

As the developmental model embraces more of psychiatry, it appears increasingly difficult to make a sharp distinction between autistic spectrum disorder and other entities such as the personality disorders, simple schizophrenia and catatonia; at times the diagnostic label reflects the clinician’s specialty rather than the syndrome.

How does Aspergers change with age?

Like many other developmental disorders, autistic-spectrum disorders improve with age, although the symptoms, such as stereotypies, may resurface with arousal, whether from anxiety, boredom, anger or excitement. However, while the more overt symptoms of autism are usually at their most florid in early childhood, the symptoms of Aspergers may only become obvious with the social and functional demands of adolescence.

Besides an innate link with varied comorbidity, there is the stress of growing up with Aspergers that arises from unrecognized disability, limited achievement and a sense of failure, often revealed by an increasing contrast with more autonomous and successful siblings or peers. In addition, the syndrome distorts relationships with family and peers, who can be infuriated by the person’s self-centered insensitivity, obsessiveness and rigid inflexibility. All this can add secondary disability and result in a degree of dependency that is out of proportion to the person’s intellectual ability (Howlin et al, 2004).

Over a third of people with autistic-spectrum disorders develop epilepsy, the risk being linked to the degree of developmental delay and receptive language deficit. There is no specific study of epilepsy in Aspergers, although the relatively normal ability and language suggest that the risk is lower, possibly 5–10%, and that it is more likely to start later, in adolescence or early adulthood (Tuchman & Rapin, 2002).

The presentation in adulthood—

Aspergers in grown-ups presents with particular, and often subtle, difficulties, especially in communication, social relationships and interests. Not all people are affected as extremely as in the descriptions below. In some it is questionable whether they simply fall within the normal range of variation, particularly male, and whether their behavior represents psychiatric disorder or isolated, specific developmental characteristics.

Communication:

This is often obviously abnormal, ‘conversation’ taking the form of one-sided, circumstantial lectures delivered impassively by a seemingly robotic figure with a mechanical voice. However, less obvious conversational abnormality includes unrecognized, underlying discrepancies between verbal and non-verbal language, and between comprehension and expression. These can lead both the affected individual and those around him to misjudge his abilities, expectations being either too high or too low. Very often, reading works where listening has brought incomprehension. Often, the life of someone with Aspergers can be transformed if as much as possible is presented to him in writing.

Social relationships:

These are one-sided, distant or even absent, rather than really reciprocal. Behind this is an unempathic objectivity that results in difficulties that range from understanding friendship (and how friends differ from acquaintances) through to making sexual relationships and grasping the rules that distinguish, for example, seduction from date rape. The person is not uninterested in relationships but, misunderstanding them, is too intense or too detached.

Interests:

A key feature of Aspergers is repetitive or focused activities. At their most extreme, these result in an eccentric whose life is characterized by its routine, rigid and systematic approach and whose world might narrow down to railway timetables or stamp collecting. Any development of an interest remains circumscribed (for example, restricted simply to collecting more of something rather than gaining wider expertise) and, far from becoming the basis of a social network, is enjoyed in solitude.

Psychiatric diagnosis and assessment—

Diagnosis on its own is of limited value, but it is the gateway to a great deal of information, specialist groups and resources, including financial support. It is often not recognized that a diagnosis is simply a working hypothesis: it is a clinical judgment that has to strike a balance between being too broad and being too narrow; and it is a process that can evolve with time and changing circumstances. It is essential, therefore, that it is categorical and that everyone involved appreciates its purpose, as its cut-off points will depend on whether it is:

• administrative – giving access to services or resources, or being part of legal assessments regarding mental capacity, reliability as a witness, fitness to plead and level of responsibility
• clinical – a best guess to guide further treatment;
• for research – excluding any doubtful cases

However, whatever its purpose, a diagnosis should only be given if it has a useful function.

Assessment follows diagnosis and it should be broad and multidisciplinary (Howlin, 2000), in particular, taking account of:

• cognitive ability – identifying discrepancies between receptive and expressive, verbal and non-verbal communication
• comorbid developmental disabilities, notably ADHD, tics and dyspraxia
• functional ability – acknowledging the extent to which problems in executive function and limited empathy can disable someone who is otherwise very able; strengths should be identified, particularly any special talents that may become foundations in life

Diagnosis and assessment in Aspergers:

Many people with Aspergers misperceive their circumstances. It is therefore essential to obtain a comprehensive picture of them that includes the accounts of others such as moms and dads, friends, educators and employers (Green et al, 2000).

A report of the assessment should be given to the patient in writing, to avoid misunderstandings that might arise with spoken communication.

If Aspergers is suspected, diagnosis needs a clinician familiar with the syndrome as well as with the alternatives. The diagnostic judgment should be based on a developmental history (that takes a lifelong perspective) combined with a present state examination designed to identify the features of autism.

Diagnostic instruments--

Diagnostic instruments help clinicians in the systematic collection of the right information, which they might match against criteria that, although evolving, hold them to a consistent threshold and a broad conceptual construct. Matching may be refined by an algorithm, but in practice, such mechanical simplicity can be misleading, particularly when there is a comorbid overlay.

Furthermore, although a number of diagnostic instruments have been developed to identify autism, the few that have been designed specifically for Aspergers are mostly intended as screening questionnaires. They vary in the extent to which they are structured, ranging from the very specific, self-rating Australian Questionnaire (Attwood, 1999) through to the Aspergers Diagnostic Interview (ASDI), a simple framework that has good inter-rater reliability (Gillberg et al, 2001).

The more formal, structured interviews, such as the Autism Diagnostic Interview – Revised (ADI–R; Lord et al, 1994), were initially developed as research instruments to identify kids with clear-cut autism. Broader instruments have since evolved, such as the Diagnostic Instrument for Social and Communication Disorders (DISCO). The Autism Diagnostic Observation Schedule (ADOS; Lord et al, 2000), a subject interview designed to elicit the signs of autism, has a module for able and fluent adolescents and adults. The International Molecular Genetic Study of Autism Consortium intend to publish their Family History Interview (FHI), a set of schedules that includes matching subject and informant interviews as well as a scale to record observed behavior. Whatever instrument is used, it is essential that it takes account of childhood as well as current symptoms.

Many people will have diagnosed themselves from books and self-rating scales and are seeking formal confirmation. A screening assessment focusing only on current symptoms may be relatively brief, particularly if it complements a psychiatric interview. A more definitive diagnostic interview can require several hours and is not something to undertake without good reason.

Differential diagnosis and comorbidity—

Comorbid pathology is frequent and Aspergers has been linked with a number of particular disorders (Green et al, 2000; Tantam, 2003). This association has sometimes arisen from diagnostic confusion but it also reflects a real predisposition (Box 2 ). After helping people come to terms with the diagnosis and its implications (something probably best done by the non-psychiatric services described below), psychiatric management usually lies in the recognition and management of the comorbid disorders.

Schizophrenia:

Despite Asperger’s early intent, it was only in 1971 that autism was distinguished from schizophrenia, although a number of subsequent reports have suggested that it might yet be identified as a predisposing factor. The similarity of Aspergers to a pre-schizophrenic, schizoid personality disorder as well as to residual schizophrenia, in both clinical presentation and neurobiology, has led to a diagnostic confusion that has not taken account of their differing developmental trajectories. Such suggestions of a return to the concept of the unitary psychosis arise where association has been mistaken for causation – both may have similar underlying anomalies giving rise to similar, but not identical symptomatology.

Mistaking Aspergers for psychosis--

• A pragmatic difficulty in appreciating the extent or limitations of someone else’s knowledge of a topic, coupled with a tendency to obsessionality, can result in over-inclusive, irrelevant speech that mimics schizophrenic thought disorder.
• Autistic-spectrum disorders can show improvement with neuroleptics (Campbell et al, 1996).
• High arousal in a developmental disorder can produce an acute and transient psychotic state with hallucinations and thought disorder.
• Impassivity and a lack of awareness of the emotional climate can look like inappropriate or blunted affect.
• Incomplete answers can sound like psychotic symptoms. For example, a bald report, without elaboration or context, of everyday teasing can sound like persecutory delusions.
• Occasionally, a very vivid account of events is held consistently but is plainly false; these perceptions do not seem to trouble the individual or to be associated with any functional change. There is the sense that the individual is living in a ‘video world’, only detectable and comprehensible if the interviewer has also seen the video.
• The catatonic symptoms (e.g. odd mannerisms and postures, freezing or difficulty in initiating movement) that occur in a variety of neurological conditions, including schizophrenia, can also occur in autistic-spectrum disorders (Wing & Shah, 2000).
• The slow and reluctant response of patients asked to perform a task that has no meaning for them resembles the negative symptoms of schizophrenia.
• Thoughts expressed simply and concretely by someone who has difficulty in describing internal symptoms can sound very like hallucinations.

Although it is doubtful that an autistic-spectrum disorder predisposes to schizophrenia (Tantam, 2003; Howlin et al, 2004), it certainly does not protect. If psychosis arises, early treatment is so important to prognosis that it should not be delayed by diagnostic doubts. However, it must be recognized that, once a patient has been established on neuroleptics, it can be difficult to disentangle the two disorders.

Affective disorders:

Affective disorders occur more frequently in Aspergers than in the normal population. The inability to label internal feelings can lead to their expression in confusing and even bizarre ways.

Chronic dysphoria may merge with more clear-cut depression, anxiety with phobic states, and over-arousal with panic. All can respond to serotonergic medication. This raises the issue of how readily and how early medication should be tried, particularly in the light of the reservations about the use of the serotonergics in depression (Nutt, 2003). Although one positive randomized controlled trial is available (McDougle et al, 1995a), most of the evidence of their efficacy in autism comes from open trials and is limited to the longer-established SSRIs. Individual patients resort to 5-hydroxytryptophan or St John’s wort.

Obsessive–compulsive disorder:

A natural reaction to the mess of everyday life is to establish order (although the greater the success in achieving a set, predictable world, the greater the distress when faced with novelty and change). For a person with Aspergers this reaction may become pathological: for example, the commonplace collection of objects can come to dominate his life as well the lives of those around him, and if all sense of proportion is lost an obsession can lead to criminal offending.

Management includes the use of standard techniques to cope with obsessions and routines – diversion, environmental change, pictorial or written preparation for change, and the introduction of alternative rules and routines as well as of limits.

Serotonergic drugs can reduce the obsession, although finding the right drug may take a number of trials and, once found, its effect may be only partial and temporary. Medication does allow the introduction of changes in an individual’s life and of behavior that might reduce the likelihood of recurrence.

Obsessional traits run through much of biological psychiatry as well as being an overlapping familial trait in autistic-spectrum disorders (Hollander et al, 2003). The absence of internal resistance and anxiety in autistic disorders has caused some to question whether this is truly obsessive–compulsive disorder (Baron-Cohen, 1989), particularly because the content of the thoughts and the form of compulsive behavior differ from that of the ‘neurotypical person’ (McDougle et al, 1995b). All the same, as the management is similar, the distinction may be academic.

Other developmental disorders:

Aspergers has been linked with ADHD, tic disorders (including Tourette syndrome) and various specific learning disabilities, notably disorders of executive function and motivation that make it difficult for an individual to develop an occupation.

Alcoholism:

Alcohol is an effective tranquilizer, particularly for someone who finds social groups uncomfortable. Aspergers can add a compulsive quality to social drinking and encourage isolated drinking ungoverned by normal societal conventions. The evidence for alcohol misuse in Aspergers is more anecdotal than quantified by systematic research, but its significance lies in the quality of its psychopathology rather than in any increase in frequency of drinking.

Offending:

A reluctance to link any disorder with criminality, a tolerance for disturbance in anybody with disability and an unwillingness to prosecute where conviction is uncertain, all combine to mask any association between psychiatric disorder and offending. However, there is a case for suspecting the undiagnosed syndrome in a number of forensic presentations as a number of predispositional elements come with Aspergers. Various factors combine to make violent aggression relatively frequent in Aspergers: ‘hitting people’ was a problem in 40% of a large case series (Tantam, 2003).

Forensic presentations--

The following criminal behaviors might indicate undiagnosed Aspergers:

• Computer crime
• Inexplicable violence
• Obsessive harassment (stalking)
• Offenses arising out of misjudged social relationships

Characteristic features of Aspergers that predispose to criminal offending--

• An innate lack of awareness of the outcome that allows people to embark on actions with unforeseen consequences; for example, fire-setting may result in a building’s destruction and assault in death.
• An innate lack of concern for the outcome can result in, for example, an assault that is disproportionately intense and damaging. People often lack insight and deny responsibility, blaming someone else; this may be part of an inability to see their inappropriate behavior as others see it.
• Difficulty in judging the age of others can lead the person into illegal relationships and acts such as sexual advances to somebody under age.
• Impulsivity, sometimes violent, can be a component of comorbid ADHD or of anxiety turning into panic.
• Misinterpreting rules, particularly social ones, people find themselves unwittingly embroiled in offenses such as date rape.
• Social naïvety and the misinterpretation of relationships can leave the individual open to exploitation as a stooge. Their limited emotional knowledge can lead to a childish approach to adult situations and relationships, resulting, for example, in the mistaking of social attraction or friendship for love.
• In formal interviews, misjudging relationships and consequences can permit an incautious frankness and the disclosure of private fantasies which, although no more lurid than any adolescent’s, are best not revealed.
• Lacking motivation to change, people may remain stuck in a risky pattern of behavior.
• Overriding obsessions can lead to offenses such as stalking or compulsive theft. Admonition can increase anxiety and consequently a ruminative thinking of the unthinkable that increases the likelihood of action.

Many of the characteristics listed in Box 5 affect the individual’s capacity to make valid decisions, thus limiting his level of responsibility. Whether someone is identified as an ‘offender’ (as distinct from someone who has committed an offense) depends on chance factors in their environment such as the effectiveness of their supervision, the recognition of autistic-spectrum disorder and the understanding of those around.

Reliability as a witness:

The report of an event depends on what the observer actually saw, their interpretation of the scene and on their memory. Certain characteristics of Aspergers color individuals’ understanding and recall of a situation. Consequently, in deciding on fitness to act as a witness it is important to assess, first, the individual’s ability to give a reliable account. Here it is essential to get enough specific, concrete, verifiable material such as details of the scene (e.g. the clothing worn and the color and pattern of the wallpaper), as well as of the events preceding and following the episode, to be able to identify any temporal confusion.

 Features of Aspergers that affect an individual’s reliability as a witness--

• Difficulty in distinguishing his own actions from those of others, which may extend to a confusion of reality with observed fiction.
• Difficulty with the dimension of time. Although the person may recall the sequence of events correctly, his perception of the relative periods of intervening time may be so inaccurate as to make it unclear as to whether he is recounting something that happened the previous day, week or year.
• Difficulty with the normal structure of official interviews, whether in the police station or the witness box, where the unfamiliar surroundings and circumstances will increase his disabilities.
• The interview can be distorted by the misinterpretation of rules and relationships, with undue compliance complicated by a rigid tendency to adhere to (and believe in) a story once it is in his head.
• The risk of misinterpretation of what he has seen or heard.

Second, the individual’s ability to give a good account and to comprehend and to respond to questions must also be assessed. Allowance must be made for communication problems such as the use of words without understanding their significance, the characteristic, very literal comprehension, and the inability to take in non-verbal components. Here the use of visual aids, particularly written text, can help communication, which may be made even more friendly by the use of a computer.

There is a risk that people with Aspergers may not be recognized as vulnerable adults, particularly if they have a good academic awareness of right from wrong. How they present themselves becomes of particular importance with the removal of the right to silence, as it can affect fitness to plead (Gray et al, 2001).

Broader (non-psychiatric) management—

Structure and support can reduce the stress of everyday life to the point that an individual with Aspergers can function (whether in education, employment or family domesticity), and every patient needs to be seen in this context (Powell, 2002). Education is central as, although innate deficits can improve with time, people with the syndrome have to learn consciously the skills that most acquire intuitively. Examples are the unwritten rules of social life such as how to make social overtures, to complain and to avoid exploitation (Segar, 1997).

Education:

Life in a small primary school, with consistent classmates, the same classroom and the same teacher, can be sufficiently straightforward for kids to cope. It is when they move from this relative stability into the secondary school confusion of different sets and multiple educators that they are tested and their true degree of disability becomes apparent.

Education needs to be unusually broad and explicit as these students develop on a wide variety of fronts. Besides supervision to cope with organizing and completing academic tasks, they will need support to develop self-help skills in everyday areas such as shopping, laundry and cleanliness (where obsessionality may block self-care) and social skills (conversation, dating, coping with authority, asking for help) (Attwood, 2000). All of these have to be taught if people with Aspergers are to develop the sense of a positive identity and competence that comes more naturally to normal, ‘neurotypical’ young people.

Further education gives the opportunity to learn the skills necessary to cope with employment, higher education or simply everyday life. Although sector colleges are becoming better geared to students with special needs, they are limited by their structure, funding and expertise. People who are unusually awkward, sensitive, violent or disturbed may require a place at a specialist college. These provide a compatible peer group, staff with understanding and expertise, and considerable support.

Funding for up to 3 years of specialist further education can be obtained for people between the ages of 16 and 25 years. It is intended for those who want to progress beyond school-leaving but do not have the skills or ability to cope with sector college.

Although social demands may be less than in other forms of education, the lack of structure and supervision defeat many who are otherwise academically able. In England, the Special Education Needs and Disability Act 2001 (SENDA) has established legal rights for disabled students and has outlawed discrimination in education at all ages. Students can declare their disability on application to a university or college.

A number of universities have put in place measures to help students with autistic-spectrum disorders. Such measures may create a more sympathetic setting than any previously experienced and bring the hope that earlier disturbance, the consequence of an uncomfortable environment, will evaporate. However, no matter how specialist the college or attuned the university, it cannot be a substitute for an adolescent psychiatric unit or a therapeutic community if it is to retain an academic climate.

 Measures adopted by universities to help students with autistic-spectrum disorders--

• A disability support service that has the skills and status to liaise with departments to help them to adapt to the needs of these students (e.g. by extending work deadlines, or modifying arrangements to enable a student to complete placements, practicals or fieldwork).
• A key worker, usually a postgraduate student or member of staff, to whom a student can go for immediate advice or pastoral support.
• A public education program and specific training, for both staff and students, to make them aware of autistic-spectrum disorders and their difficulties, and of the support service.
• Specialist tuition to develop suitable study skills (e.g. language skills, structuring their work and organizing their approach to studying).
• The use of aids such as handouts and tape recordings of lectures.
• Help with managing allowances, budgeting and everyday skills such as laundry and shopping. Mentorship schemes, possibly through the students’ union, can draw in other students.
• A clear and realistic plan for the student’s exit from college when they have completed their course. There should be reviews in the final year and, if the student is under 25 years old, Connexions (the careers and employment advisory agency designed to help people throughout adolescence and into adulthood) can be contacted.
• A support network for isolated students. Group seminars, tutorial and study groups can all contribute, as can paired or group assignments and recreational activities.
• An introductory program that includes first contacts (e.g. with a tutor), good induction and orientation (e.g. with maps of the campus and lists of important contacts and their roles), positive family contacts when appropriate and, above all, a flexible approach that adapts to different students and their particular needs.
• Safe places on campus where students can withdraw, calm down and refocus when anxiety or anger threaten to get out of control. The involvement of all elements, including the campus police and the students’ union, can allow fragile students to complete their course successfully as well as learn to manage their over-arousal.

Employment:

People with Aspergers often find themselves in a maze guided by disability specialists with limited knowledge of the disorder. Their difficulties start with the skills required for a job interview. Then there is the need to cope with people, the unpredictable and the unexpected that are part of many jobs. Even jobs that seem ideal, for example that capitalize on special interests or a methodical approach can fail should an individual become bogged down in ritual slowness or should his interest take over – an enthusiasm for timetables has to remain subservient to giving others the information. The successful post takes these factors into account and builds in support so that, when things start going wrong, they are quickly detected and rectified. Such help may come from a dedicated individual, the job coach, but eventual success will depend on how far the setting and, in particular, others at work are able to take over.

Several specialist schemes have been developed, most notably Prospects, a program run by the National Autistic Society, which has been very successful in helping people to get and retain jobs, largely at a skilled clerical or technical level. Its experience has been of a workforce characterized by good time-keeping and the ability to get on with work that others might find too repetitive, without being distracted by the temptation to waste time in gossip or to engage in promotion-seeking office politics.

Social care:

Many people will need continued everyday support that may range from a regular visitor through to someone living in the same house. For some, this will be to ensure that they eat, care for themselves and continue to take part in society. For others, it will be to help them to avoid or disentangle themselves from the predicaments that arise from their social naïvety, lack of foresight, or odd appearance and behavior (which can make them the target of kid’s abuse and the neighborhood scapegoat). Some will continue to get this support from moms and dads, others may acquire a partner or friend, and a few will need to employ someone on a formal basis. Many find support irritating and difficult to accept.

Family support:

Aspergers adds an unusual complexity to the family, and similar traits in other members may either compound or buffer matters. Moms and dads, partners and siblings may need formal counseling or group work, particularly if they themselves have communication difficulties, an unusual objectivity or a focused persistence. An Asperger support group can offer substantial help.

Service implications—

People with Aspergers fall into therapeutic limbo, too able for learning disability services and foreign to general psychiatry. A political groundswell, driven by families, is pressing for better psychiatric services that are sufficiently familiar with the disorder for it not to disadvantage patients. Psychiatric resources were insufficient even before autism achieved ‘popularity’. Consequently, it is unrealistic to hope for separate specialist facilities for out-patients, let alone in-patients, except at a regional level. Existing resources will need to become autism-friendly, something that is achieved by staff training as much as by environmental change.

It helps that the label of ‘autism’ attracts substantial funding (more than ‘personality disorder’) and that there are a variety of specialist support services. However, although good specialist care services can provide comfortable community placements for very disturbed people, some psychiatric services have found themselves overstretched by over-ambitious care providers that take on more than they can cope with. Supporting and influencing such services in their development might avoid this problem.

The psychiatrist has to keep pace with the growing awareness of patients and the public, as much to exclude Aspergers as to recognize it and its consequences. The effects of comorbid disorder have to be disentangled from the underlying syndrome, and the diagnosis should be used selectively rather than as a catchall for any unclassifiable personality or disorder. The recognition of developmental disorder in an ever-increasing range of social and interpersonal difficulties carries the risk of retracing earlier psychoanalytic paths that medicalized the human condition.

All psychiatric specialties need to develop sufficient knowledge and skill in dealing with autistic-spectrum disorders to avoid accusations of incompetence. An initial step would be to agree the minimum level of expertise and training.

Summary--

1. The characteristics of Aspergers include:

a. specialist expertise
b. a lack of speech
c. a lack of interest in people
d. a lack of friendships
e. a lack of awareness of the feelings of others

2. People with the syndrome frequently have/have had:

a. a psychotic episode
b. ADHD
c. alcoholism
d. anxiety disorder
e. depression

3. A person with Aspergers:

a. has difficulty with the unfamiliar and unstructured
b. has very good recall of events
c. needs psychiatric treatment
d. will probably not develop epilepsy
e. will probably require long-term support

4. Aspergers is:

a. a genetic disorder
b. a mild disorder
c. distinct from autism
d. part of the autistic spectrum of disorder
e. predominantly a disorder of childhood

5. Aspergers:

a. can limit mental capacity to make decisions
b. improves with age
c. occurs in about 2% of the population
d. restricts employment
e. will probably include several specific learning disabilities

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