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Asperger's Kids & Sleep Problems

"We are parents of a newly diagnosed son (age 9) with high functioning aspergers. He wakes up in the middle of the night. He is in good health. We have tried Valerian, but that has not helped much. Is this a common trait for children with autism? Could this be hormonal? Can you suggest anything to remedy this?" 


The first known attempt to evaluate the sleep patterns of kids with Aspergers and High-Functioning Autism (taking into account sleep architecture and the Cyclic Alternating Pattern or CAP) finds that these boys and girls have:
  • sleep restlessness
  • problems related to initiating sleep
  • morning problems
  • daytime sleepiness
  • a high prevalence of some sleep disorders

The study, authored by Oliviero Bruni, MD, of the Center for Pediatric Sleep Disorders at University La Sapienza in Rome, Italy, focused on 8 kids with Aspergers, 10 with Autism, and 12 healthy control kids. The moms and dads of these kids filled out the following materials:
  • Autism Diagnostic Observation Schedule, a semi-structured, standardized assessment of communication, social interaction and play or imaginative use of materials for children who have been referred because of possible Autism spectrum disorders
  • Child Behavior Checklist, a questionnaire used to examine daytime behavior in kids
  • Pediatric Daytime Sleepiness Scale, which evaluates the relationship between daytime sleepiness and school-related outcomes
  • Sleep questionnaire

In addition, the kids took the Wechsler Intelligence Scale for Children, which measures verbal IQ, performance IQ and a full-scale IQ, and also underwent an overnight poly-somnogram, or sleep study.

Several sleep parameters (i.e., time in bed, sleep period time, number of awakenings per hour, and sleep efficiency) were evaluated. CAP, a periodic EEG activity of non-REM sleep characterized by repeated spontaneous sequences of short-lived events (phase A) with the return to background activity identifying the interval that separates the repetitive elements (phase B), was also scored.

According to the results, 50 percent of the kids with Aspergers were reluctant to go to bed, while 75 percent felt a need for light or a television in the bedroom, 87 percent had difficulty getting to sleep at night, and 75 percent fell asleep sweating. In addition, 50 percent felt un-refreshed when waking up in the morning, 87 percent had difficulty waking up in the morning, and 87 percent felt sleepy during the day.

With respect to the CAP (in comparison to healthy controls), subjects with Aspergers showed a lower total CAP rate in the first two sleep stages, but not in slow wave sleep. In addition, they showed an increased percentage of synchronized EEG patterns and a decreased percentage of desynchronized EEG patterns. Further, the duration of the A and B phases, and consequently the entire CAP cycle, was longer. Compared to the kids with Autism, Aspergers subjects showed an increased CAP rate in slow wave sleep and a decrease in the second sleep stage. The duration of the A phases was longer, as well as the CAP cycle duration.

This study showed peculiar CAP modifications in kids with Aspergers and represented an attempt to correlate the quantification of sleep EEG oscillations with the degree of mental ability or disability.

Aspergers is one of several Autism Spectrum Disorders (ASDs) characterized by difficulties in social interaction and by restricted and stereotyped interests and activities. Aspergers is distinguished from the other ASDs in having no general delay in language or cognitive development. Although it is not mentioned in standard diagnostic criteria, there are frequent reports of motor clumsiness and atypical use of language.

It is recommended that kids in preschool sleep between 11-13 hours a night, school-aged kids between 10-11 hours of sleep a night, and adolescents about nine hours a night. Here are just a few tips to help your youngster sleep better:
  1. At bedtime, do not allow your youngster to have foods or drinks that contain caffeine. This includes chocolate and sodas. Try not to give him or her any medicine that has a stimulant at bedtime. This includes cough medicines and decongestants.
  2. Do not let your youngster fall asleep while sitting in the car during transport, sitting in front of the TV, being held, rocked, etc.
  3. Establish a relaxing setting at bedtime.
  4. Follow a consistent bedtime routine. Set aside 10 to 30 minutes to get your youngster ready to go to sleep each night.
  5. Interact with your youngster at bedtime. Don't let the TV, computer or video games take your place.
  6. Keep your kids from TV programs, movies, and video games that are not right for their age.
  7. Supplements such as melatonin and ZMA have been found to be effective in a significant number of cases.

Kids are encouraged to inform their moms and dads of any sleep problems they may have. Caretakers who suspect that their youngster might be suffering from a sleep disorder are encouraged to consult with their youngster's doctor or a sleep specialist.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

COMMENTS: 

*   Anonymous said... wondering if anyone on here can help,,i have a 12 year old son who cant sleep,his doctor at camhs put him on melatonin which worked for a few weeks,now it dosnt seem to be,,he cant drop off too sleep which means hes getting 5 hours a night even on school nights and his school have rang me to say that hes nodding off in class,ive tryed routine etc but dosnt work,once he is asleep he will stay asleep but he cant drop off in the 1st place 
*   Anonymous said... I have problems sleeping and no-doctor will provide me with any medication and im suffering too.
*   Anonymous said... my lad had to have assesments 1st to see if he really needed it,it was a last option for me,,some foods have melatonin but low levels of it.
*   Parenting Aspergers Children - Support Group said… http://www.myaspergerschild.com/2010/01/aspergers-children-and-sleep-problems.html
*   Parenting Aspergers Children - Support Group said… Try ZMA (Zinc Monomethionine Aspartate). This is a new recommendation that is getting some amazing results!!
*   Anonymous said... Any advice for children with AS that have sleep issues? He takes 5 mg melatonin and .1 clodnine before bed but is still up every two hrs he is 3.5 yrs old 
*   Anonymous said... My son was the same way when he was younger. I kept trying higher doses of melatonin but it only gave him headaches. So then I did the reverse and gave him a very small dose of 300 mcg and it worked! Now he is 8 and we have added a long, warm bath to his routine and he reads about 45-60 minutes on his own. It really seems to calm him down.
•    Anonymous said... Clonidine for my aspie to
•    Anonymous said... In the U.S. at least, melatonin is not prescription - it's sold with vitamins and supplements - maybe have a look?
•    Anonymous said... It is common for our family. He wakes up just enough for his brain to start moving- and he's up. We have discovered him in our car, in the backyard and also setting off fireworks in the kitchen. (he found our hiding spot!) Our family doctor prescribe an antihistimine and it helps both his sleep issues and some of his eating issues. My son is Asperger's/ADHD, so it is also combatting the medicine he takes during the day- for his appetite. And believe it or not- and I am not a medicine pusher- his sleep at night and getting up through the night seemed to normalize once I had him on adhd medicines. I was warned to stay away from melatonin for prepubescent boys, the doctor said they hadn't fully tested it. But, there was some indication that it may retard there physical/sexual development.
•    Anonymous said... Melatonin didn't work for my 9 yr old aspie. Clonidine works for him.
•    Anonymous said... Melatonin for my little ones
•    Anonymous said... Melatonin has been great for my 8 year old son, don't know how I managed without it
•    Anonymous said... Melatonin has opposite effect on my aspie teen, keeping him awake more than he is (don't think he's slept a night in his life) and giving him extreme nightmares. So we r still at a loss. Physical exercise helps but hard to get him to move much.
•    Anonymous said... Melatonin works for my 8yr old Aspie.
•    Anonymous said... My 13 year old son still wakes up most nights unless he stays up really late. Can make for a rough day when he is tired and grumpy. I just make him go to his room and recalibrate. I have heard from my other friends that this is pretty normal.
•    Anonymous said... My 13 yr old (high functioning female AS) has never slept very well or very long. The only thing that seems to work with her is extreme amounts of physical exercise. Her main hobbies are JuJitsu and climbing and she does 2 - 4 hours a day of one or the other. Even with that she rarely gets more than 5 hours sleep in 24. Having said that she doesn't seem to suffer from this 'lack' of sleep and at 13 is quite capable of keeping herself occupied at night with books or Gameboys. Nobody else in her class can understand why she has an official bedtime on school nights of 11:30 - 12! She has found her own balance over the years and it seems to work for her. 19 yr old ('more' AS than her) on the other hand can now quite happily sleep for 12-14 hours a day if left to his own devices which comes with it's own set of problems ...
•    Anonymous said... My 8 yr old began using melatonin 2 years ago... We started with 0.5 mg and are now using 2.5 mg. he needs it almost every night but on weekends I hold off to see if he can go to sleep on his own. Which he can sometimes . Melatonin has significantly reduced the 1-2 hour falling asleep snuggle sessions we use to have to do. He still would wake every night and rise early. After we began a gluten and dairy free diet this summer (due to allergies found by the naturopath) we had our first night where he slept all night. Honestly it has happened less then 5 times in his life! We are now 3.5 months into this dietary change and last week he slept through the night 5 school nights in row! I continue to see he sleep improving . Not perfect but huge improvements. The diet has also helped his growth as he had only gained about 3 pounds in over 2 years And had not changed show size in 2.5 years. In past we did a trial with guanfecine as some have mentioned and he did sleep but usually at school which was not the point . All the best as you search for what will work for your child.
•    Anonymous said... my daughter can't go to sleep until past midnight every night and then can't get up in the morning.... but drugs are not routinely prescribed in UK. We struggle.
•    Anonymous said... My eight year old was finally put on Clonidine and MOST nights, he sleeps well.
•    Anonymous said... My son (now 12) was diagnosed at about the same age...I could NOT keep that kid asleep all night long for ANYTHING. I finally tried Melatolin (I don't know how to spell that)...he has not had a problem sleeping since then. I have read that Aspie kids don't produce the same levels of Melatolin as others. I hope that helps.
•    Anonymous said... my son had the same problem. Melatonin worked pretty well for him. Now he is 15 and no longer needs it.
•    Anonymous said... My son has hfa he also had ADHD which is now completely gone with nuerotherapy, diet and learning program's. he wakes in the night to play the iPad etc to calm himself, we started yesterday treating his beta which is the back part of his brain. We just had two weeks school holidays and they were the best EVER, not one meltdown and biggest shock of all I could reason with him - unbelievable. He is calm and focused. We are in Australia and this has worked for us
•    Anonymous said... Our son is 7 and wakes during the night but will lay and listen to his music we keep on low all night for him. We find this helps him a lot.
•    Anonymous said... The simple supplement of Melatonin sometimes works. My daughter is 13, and Melatonin would help, but taken too often she would begin waking up too early in the mornings. However, sometimes a couple of nights is all it takes to establish a sleep rhythm.
•    Anonymous said... They have put my son on GuanFACINE and he sleeps throughout the night. He is only 6. We tried 4 different ADHD medications and all increased his hyperactivity.
•    Anonymous said... We have to use Clonidine for my daughter. she wakes several times but goes right back to sleep
•    Anonymous said... We tried everything with my 9 year old Aspie. Nothing worked. We finally bought him a weighted blanket, custom made. He hasn't had an issue since. He has slept every night in his own bed the whole night since it came in the mail
•    Anonymous said... We use 5mg time-release Melatonin for our 10 year old. We found it worked 80% of the time. I added 100mg of L-Theanine and now it's a winner. We also have a custom weighted blanket, purchased from DreamCatcher Weighted Blankets. The combo ensures he gets a good, solid 10-11 hours a night and he falls asleep fast. One last thing we added, that I almost forgot, is a white noise machine for his room. It helps him to shut out his thoughts and quiet down.
•    Anonymous said... we use over the counter sleeping pills
•    Anonymous said... Where did you get the blanket Allison? My son has been waking up a lot and now is starting to sleep walk, I wonder if the blanket would work.
•    Anonymous said... Yes Melatonin has worked for my Aspie.
•    Anonymous said...  5am every morning here.
•    Anonymous said...  Our doctor had a try a few things that never worked, then a different doctor said he can just take Melatonin, which has been working very well for my 9-year-old.
•    Anonymous said... A nutritionist told me that melatonin was potentially dangerous for kids. (Can't remember why, I'll check.) Relaxing routines including breathing, relaxation exercises, warm baths with lavender, reading, etc. do help. My now 13 yo son use to come to our room at least once a night until he was about 11. I'm afraid they are just wired differently. Benadryl is helpful also, but they are not going to have the same sleep habits as nuerotypicals.
•    Anonymous said... Essential oils. Melatonin causes seizures an dB brain bleed in children.
There is also something called Lorinthine. It's amazing
•    Anonymous said... I call them " all nighters" mine has them several times a month...melatonin helps
•    Anonymous said... I love essential oils & we diffuse lavender & vetiver at bed time. It works wonders for instant relaxation & peaceful sleep! BTW - I have to add that therapeutic grade essential oils, ONLY -- like Young Living Essential Oils.
•    Anonymous said... Many nights with only 4 hours sleep, yep
•    Anonymous said... Many people on the spectrum are low in magnesium. I give that to my 10 yr old son before bed. Not only does he sleep better, his disposition is better. He is less angry, more understanding! You can do a search on it. smile emoticon. Good luck!
•    Anonymous said... Melatonin gets my vote
•    Anonymous said... Melatonin should be the best option given it is the crucial hormone for sleep.
•    Anonymous said... My 8yr old is the same he takes Catapres and Melatonin at nite, works great for a couple of weeks but he tends to repeat cycles so two weeks later we are back to sleepless nites, he can stay awake quite happily for 36+ hrs at a time smile emoticon
•    Anonymous said... Our son is 8 with the same diagnosis. Our doctors put him on trazadone to help him sleep. I notice a big difference when he doesn't get enough sleep
•    Anonymous said... The extended release formulation of melatonin works quite well
•    Anonymous said... Try Essentials oils . We use a combination of Lavender, Peace & Calming and Cedarwood. It seems to work great.
•    Anonymous said... Try melatonin
•    Anonymous said... We have never had trouble with our ADHD And HFA son - we have a strict bedtime its black and white - if we do not follow it there can be troubles. When he had his ipad he would wake in the middle of the night to play it but since its broken that hasnt been an issue.
•    Anonymous said... We use melatonin too! Seems to help, but he is still an early riser.
•    Anonymous said... We use P5P plus, it is B6 with Magnesium, we have used it for 4 years it calms our son and he sleeps well. We administer it at bedtime.

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ASD and Bereavement

"We lost my father-in-law last month due to Covid virus. My son with autism is totally devastated. It is not helped by the fact that, before the schools closed, he was spending the time before school and after school at his Grandma’s house and will now be reminded of Granddad’s absence by his empty chair. Due to the fact that I have to work full time, my sons have spent much of their time from Monday to Friday with their grandparents, so it is like their second home - they even have their own bedrooms there! I am finding it very difficult to help him come to terms with Granddad’s death. He is OK most of the time, but will then fall into a black mood and will overreact to the slightest incident and go into a meltdown. Do you have any advice?"  

CLICK HERE for the answer...



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What does it mean to have Aspergers?

"What does it mean to have Aspergers? Is it just a different way of thinking? Do 'Aspies' have severe ADHD, mild autism, learning disabilities, or are they just nerds? Do they outgrow it?"

For years, psychiatrists have debated how to classify and subdivide the category of Pervasive Developmental Disorder (PDD). Pervasive Developmental Disorder is a category that contains several specific diagnoses. Children with PDD have problems with the social interaction and often show delays in several other areas. These other areas may include language, coordination, imaginative activities, and intellectual functioning. The degree of severity can vary tremendously in the various forms of PDD.

Autism is one of the more severe forms of PDD. A child with Autism has marked difficulty relating to others. He or she frequently has delayed or absent speech and may be mentally retarded.

Aspergers (also referred to as ‘high-functioning autism’) is on the milder end of PDD. Kids with Aspergers generally have normal intelligence and normal early language acquisition. However, they show difficulties with social interactions and non-verbal communications. They may also show perseverative or repetitive behaviors.

Preschool: A preschool aged Aspergers kid might show difficulty understanding the basics of social interaction. He or she may have difficulty picking up social cues. He may want friends but be unable to make or keep any friends.

Elementary School: One often hears the phrase, “poor pragmatic language skills.” This means that the child cannot use the right tone and volume of speech. He may stand too close or make poor eye contact. He may have trouble understanding age-appropriate humor and slang expressions. Many are clumsy and have visual-perceptual difficulties. Learning difficulties, subtle or severe, are common. The Aspergers kid may become fixated on a particular topic and bore others with frequent or repetitive talk even when the other kids have given clear signals that they are no longer interested in the topic. Some have difficulties tolerating changes in their daily routine. Change must be introduced gradually.

Middle and High School: This may be the most difficult time for a youngster with Aspergers. Those with milder forms of the disorder may first come to treatment when they are in middle school. In adolescence, social demands become more complex. Subtle social nuances become important. Some may show an increase in oppositional or aggressive behavior. Children with Aspergers have difficulty understanding which of their peers might want to be a friend. A socially marginal boy might try to date the most popular girl in his class. He will probably experience rejection. He is unaware that some other girl might accept his invitation. Because of his social naiveté, he may not realize when someone is trying to take advantage of him. He can be especially vulnerable to manipulation and peer pressure.

Adulthood: There is less information on Aspergers in adulthood. Some people with mild Aspergers are able to learn to compensate. They become indistinguishable from everyone else. They marry, hold a job and have kids. Other people live an isolated existence with continuing severe difficulties in social and occupational functioning. People with Aspergers often do well in jobs that require technical skill but little social finesse. Some do well with predictable repetitive work. Others relish the challenge of intricate technical problem solving. I knew a man, now deceased, who had many of the characteristics of Aspergers. He lived with his mother and had few social contacts. When he visited relatives, he did not seem to understand how to integrate himself into their household routine. When the relatives would explain the situation to him, he was able to accept it. However, he was unable to generalize this to similar situations. Although he was a psychologist, his work involved technical advisory work, not face-to-face clinical sessions.

Associated Difficulties: Aspergers may be associated with learning difficulties and attention deficit disorder. Indeed, many kids and teenagers with Aspergers have previously been diagnosed with ADHD instead of Aspergers. Children with ADHD may have difficulty with social interaction, but the primary difficulties are inattention, hyperactivity and impulsivity. In children with Aspergers, the social awkwardness is a greater concern. As children with Aspergers enter adolescence, they become acutely aware of their differences. This may lead to depression and anxiety. The depression, if not treated, may persist into adulthood.

Treatment for Aspergers—

Medications: There is no one specific medication for Aspergers. Most are on no medication. In other cases, we treat specific target symptoms. One might use a stimulant for inattention and hyperactivity. An SSRI such as Paxil, Prozac or Zoloft might help with obsessions or perseveration. The SSRIs can also help associated depression and anxiety. In children with stereotyped movements, agitation and idiosyncratic thinking, we may use a low dose antipsychotic such as risperidone.

Social Skills Training: This is one of the most important facets of treatment for all age groups. I often tell moms and dads and teachers that the child needs to learn body language as an adult learns a foreign language. The youngster with Aspergers must learn concrete rules for eye contact, social distance and the use of slang. Global empathy is difficult, but they can learn to look for specific signs that indicate another individual’s emotional state. Social skills are often best practiced in a small group setting. Such groups serve more than one function. They give people a chance to learn and practice concrete rules of interpersonal engagement. They may also be a way for the participant to meet others like himself. Children with Aspergers do best in groups with similar children. If the group consists of street-wise, antisocial peers, the Aspergers child may retreat into himself or be dominated by the other members.

Educational Interventions: Because Aspergers covers a wide range of ability levels the school must individualize programming for each child with Aspergers. Educators need to be aware that the student may mumble or refuse to look him in the eye. Educators should notify the child in advance about changers in the school routine. The youngster may need to have a safe place where he can retreat if he becomes over-stimulated. It may be difficult to program for a very bright student with greater deficits. In one case, a student attended gifted classes but also had an aide to help her with interpersonal issues. That student is now in college. Kids with Aspergers are often socially naive. They may not do well in an “emotionally disturbed” class if most of the other kids are aggressive, street-wise and manipulative. I have seen some do well when placed with other students with pervasive developmental disorders. Some do well in a regular classroom with extra support. This extra help might include an instructional assistant, resource room or extra training for the primary teacher.

Psychotherapy: Children with Aspergers may have trouble with a therapist who insists that they make an early intense emotional contact. The therapist may need to proceed slowly and avoid more emotional intensity than the patient can handle. Concrete, behavioral techniques often work best. Play can be helpful in a limited way if the therapist uses it to teach way of interaction of the therapist uses play as a break from an emotionally tense if it is used to lower emotional tension. Grown-ups and kids may also do well in group therapy. Support groups can also be helpful.

Moms and dads play an important role in helping their Aspergers children. These young people will require time and extra nurturance. It is important to distinguish between willful disobedience and misunderstanding of social cues. It is also important to sense when the Aspergers kid is entering emotional overload so that one can reduce tension. They may need to prepare the youngster for changes in the daily routine. One must choose babysitters carefully. Moms and dads may have to take an active role in arranging appropriate play dates for the “Aspie.” Some moms and dads seek out families with similar kids. Kids with Aspergers often get along with similar playmates. Moms and dads should help educators understand the world from the Aspergers kid’s unique point of view. Parenting an adolescent with Aspergers can be a great challenge. The socially naive adolescent may not be ready for the same degree of freedom as his peers. Often moms and dads can find a slightly older adolescent who can be a mentor. This person can help the adolescent understand how to dress, and how to use the current slang. If the mentor attends the same school, he can often give clues about the cliques in that particular setting.

Grown-ups with Aspergers may benefit from group therapy or individual behavioral therapy. Some speech therapists have experience working with grown-ups on pragmatic language skills. Behavioral coaching (a relatively new type of intervention) can help the man or woman with Aspergers organize and prioritize his daily activities. Grown-ups may need medication for associated problems such as depression or anxiety. It is important to understand the needs and desires of that particular adult. Some do not need treatment. They may find jobs that fit their areas of strength. They may have smaller social circles, and some idiosyncratic behaviors, but they may still be productive and fulfilled.

The Aspergers Comprehensive Handbook 


COMMENTS:

Anonymous said... Great story! I am always asked "what is Asperger's?" when I explain it im always told "yeah, my kids like that too, they'll grow out of it, what's the problem, why do you need a label....." etc....... Ignorant people suck! LOL

Anonymous said... I so agree!!!! I hear it too....then maybe the ignorant should see if their child really needs help instead of going with the "grow out of it" ignorance! Aspies don't grow out of being aspies...they just learn to adapt. Which is insanely difficult!! As I am sure you know! Love your comment!

Anonymous said... I call it what it is. A high functioning form of Autusm. I explain my son's specific challenges (routine, high sensory needs.). My biggest challenges are the inlaws.

Anonymous said... I love both of your comments and couldn't agree more! Why do some people think they're 'experts'? Maybe it's fear? The ironic thing is that it doesn't have to be scary because there's so much wonderful support and education available for kids and parents.

Anonymous said... I just keep gettin naughty boy he will grow out of it he only young drives me insane ppl hav actualy ask me to leave shops cus he haz a meltdown if busy or noisey an when u explain no one haz a clue an i live in a small town which is worse

Anonymous said... I've been told the same as well, ranging from the "my kids are the same" to the "you need to spank your child more" comments. I've learned there is a very big difference between my Aspie son and their misbehaved kids. Have also noticed that the one's pointing fingers the most, have some atrocious social skills themselves, so it's been a lot easier to let their comments roll off my back. I know that my son is happy and healthy and doing well, that's all that really matters. :)

Anonymous said... Thanks all! its truly a blessing to have a lot of support!!! ;-)

Anonymous said... I had my first encounter with an old lady who was clearly UNaware of autism who saw fit to comment to the cashier in the next line over that "(HER) children never behaved like THAT". I'm afraid I didn't handle myself with the wit nor the tact I would have preferred to show. Thankfully what I said was out of earshot of the kids.

Anonymous said... My Son is really well behaved but what upsets me is when teachers still think he is just like all the other kids. Eg school report for mist lessons says he only writes what he is asked to do and never expands on his writing. He is very capable but needs to believe in himself. We know he has it in him to do more. Etc Ben is fairly confident and clever in so many other ways but because he is quiet etc I feel he gets ignored by his teachers. After countless meetings they still don't think he any different. They seem to forget he as asphergers. Am needing to go back to school again to remind them that ben needs a different approach e.g. More pushing with questions and clearer instructions. He is typical of an aspie child will only do what is asked. Its almost like a hidden disability so hidden the teacher forget he's different and needs much more prompting.

Anonymous said... I would like to take this moment to share a little hope. My son was diagnosed with HFA/ADHD when he was 9 yrs old & was not aloud to attend more than 2.5 hrs of school a day until Grade 6 when he started full time, by grade 9 he was on the honour roll, by grade 11 he was excepted onto the high school football team and this year he will be graduating with his peers, with plans to attend university to study criminology to get involved in forensics. He is right now getting ready for prom with his date. Please don't give up on hope, I was told to grieve the milestones my son would not share with his peers and he has proved them all wrong!
By

Thoughts from a Lady with Aspergers (ASD Level 1)

I recently received a really insightful email from a woman with Aspergers (Trudy), and with her permission really wanted to share it with you. I have left the email virtually intact so that the words are direct from Trudy and not edited in any way by me:

Hi! I just needed to write to you, after reading an email I received of this week’s Aspergers question. I am 33 and a mother of 6, I have lived my whole life not knowing that I had a name, "Aspergers" it made sense when I learned about myself, "the condition". 
 
I have to say that I am not satisfied with the way Aspergers are being treated, to me it is as if we are in the dark ages, and going about it all wrong!!! I am no expert, no do I have any qualifications to show, but I do know what it is like to be me.

We are no different to gay people who are programmed from a young age not to act gay, humanity has finally accepted they are “different from our condition”, so why can’t the Aspergers people sit and stim, along side a gay man embellishing his gestures? I was raised strict ,and by that I mean, they taught me to be a perfect model human, no sign of my aspergers was allowed to stay, & I have trouble now even getting people to believe that I am different. 
 
I do it sooo well, I even had the marriage & kids, the job the big home, friends & went along as a puppet! Not happy, but normal in the eyes of others, my aspie self still inside, but crying, just the way gay people talk about the way they tried to deny that part of them, ….it hurts! & that’s why we stim. 
 
Just like an itchy turtleneck jumper & tight shoes make me feel, so does the rules of correct behaviour! (some of which make no sense, like lies or contradictions) & no matter how long you put that jumper on me, I will never get used to it. I will only bare it for so long until I will SNAP and scream, so to with society’s expectations of me!

Yes, let us know about what is normal to “you” , we “need” the info to understand you! PLEASE STOP TEACHING US TO “BE” NORMAL, spend all of your efforts on teaching those around us how to accept us & you will see how beautiful as aspergers can be, & we will stop most of the withdrawing behaviour all by ourselves, 
 
WE ARE QUITE BRIGHT U KNOW! …..and we DO have feelings just that they don’t show unless we feel safe to be ourselves & comfortable with the surrounding human input! So stay calm, and just talk to us, we take in phenomenal amounts of info, but we see “more” than u. 
 
We see a lot of the inaccuracies in your gestures, as compared to your speech, we hear more, like the speech patterns & vague inaccuracies in your tone compared to what is being said & those mixed messages are what confuses us. We are living lie detectors but u imagine how complicated the world is then! Learn how to be honest around us, we benefit greatly! If u are feeling something, tell us, but don’t be a drama queen. We are very sensitive & to us, it is just like another sense along side sight & touch etc…& we get overwhelmed by it & we cant describe it!

Have u noticed that aspies like using computers and prefer the words without emotional attachments! Telephones are bad as we can still hear the confusing stuff, just like in person, but worse, as we lack the input of a face & gestures,… but u may see an aspie that wont look at u,… well.. they are not comfortable with something that is coming out of u. 
 
They detect a lie & are looking away to save themselves from the confusing info. But we also look away from u if we are attempting a lie, as we think that u can see it, the way we can! ..Yes, we need to practice being around u ,but u need to learn to be around us even more!!! as I think QUITE FRANKLY, normals are the slow learners!

~ Trudy 
 
 
Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
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COMMENTS:

1. Trudy, your words brought tears to my eyes. It has taken me 13 years to see the beauty of my son and his ability rather than his dis-ability because, like you, I was raised to be a ‘good girl’ and to be ‘normal’ and do what was expected of me. Fortunately my son has been good at pointing out the error of my ways and my inconsistencies, and the lies I was telling myself although I didn’t realise it. I am working more and more with other parents or partners of undiagnosed Aspies and helping them to let go of their predetermined social rules. As they do this they start to see the joy and the liberation that Aspies are bringing for us all. You don’t have to be an Aspie to resent social conditioning! Many people are then going on to discover their own sensitive natures that were squashed or repressed in their attempt to ‘fit in’. Many of these non-Aspies also discover their Aspie tendencies - not enough to necessarily be diagnosed with it, but certainly to be able to step further into their son’s, daughter’s or partner’s world. In the process they are healing so many of their own hurts, as I have been called to do by my son. He has needed me to do this so that I can allow him to be who he is, and as I do that, I am also freeing myself. EFT (emotional freedom techniques) is a great help in this respect, and I love helping those whose life purpose it is to bring truth to the planet. ALL Power to the Aspie elbow I say - let’s all open our ears to what they have to tell us and rediscover the joy of being true to ourselves. Thank you Trudy for your courage and your commitment to yourself. love Marian

2. OMG!!!!!!!!!! This explanation is so exact! We have struggled to put our thoughts together for a Cliff Notes version that everyone can understand. You nailed it! Thank you. I will share this with my nearly 100 families on our listserve and all special ed staff at Ocean View School District in Huntington Beach, California. We are grateful!

3. Hi Trudy, I’m an adult with Asperger’s, too. It’s interesting that you compare your experiences to that of a gay person. There are certainly a lot of similarities. And just as no two gay people have exactly the same feelings or experiences, no two Aspies are alike. I would gently suggest that that your letter not be held up as an example of “what we are like”. This is what YOU are like. You don’t speak for me or anyone else. Myself, I’ve had my rough spots in life, but I am learning to deal with it. That’s all we can do, right? Of course, I’m lucky that I have family members (especially my husband) who are aware and understand. I do not consider myself oppressed. I suppose you could say I’m still “in the closet”, because I don’t wear my diagnosis on my sleeve. I have Asperger’s, but I refuse to be defined by it. Another metaphor could be the act of moving to a different country. You are the foreigner; you don’t speak the language, you don’t know the customs. It would be preposterous to expect your new home to change for you, so you learn to adapt. You do what you need to do to survive. You will never truly be the same as a native person, nor should anyone expect you to be…but with experience, you grow, and you learn, and you develop. Because we all do what we have to do to survive. BTW, I can completely sympathise (surprise!) with your rant, because I’ve had a lot of the same feelings too. Do you have any obsessive interests? I find a lot of comfort in mine. Cheers, Vicky

4. I totally agree with what you said. My son is 10 and is told to stop doing this or stop doing that beacause it isn’t right. I’m sick of hearing it. This is the way he is and i don’t want him to change. I love his knowledge, behavors, thoughts and everything else about him. School is the worst enviroment for kids with AS because they are expected to act a certain way. Well too bad because my son is who he is and that is his normal. Get used to it.

5. I just explained to my (currently undiagosed but very confused and unhappy) 14 yr old son that I too have some Aspie traits - but I now try to celebrate, embrace and use them. That only happened after age 40, when I began self-directed health research on my son’s cleft condition after his birth. I was greatly “validated” by getting a few research awards, speaking on a physician’s panel, and receiving a University equivalency to attend the Univ. of Calgary med school and take grad classes in health sciences. THERE IS A PLACE IN THIS WORLD FOR ALL OF US!! and how much happier we are when we find it… thank you Trudy for sharing what it’s like to be you, and peace to you. I too do EFT (see http://www.emofree.com) and it has helped me greatly too; and reading the comments above, I realized I must encourage this unhappy boy to get back to doing his tapping…

6. Thank you Trudy: For sharing what your life has been like. I am raising my 9 yr old grandson with Asperger, he is a very awesome child. He has his moments with the meltdowns we have learned to redirect him. Also, no yelling allowed in the home that helps. We give him his choices on his clothing, TShirts and things he feels comfortable with. Also, we also make him “feel” a big part of our family. Also with anxiety, we don’t disapoint him with things or try not to as he can not cope with that. I try to get a feel for what the world of stimming is to him. we give him his space with that. He does not do that in school. He knows he is different. He is a very bright boy. we encourage him daily. He loves to Read, and play on the computer and games. He is very bright!

7. Thank you for sharing about what Asperger’s is like for you. I too am a mother of 6, also with Asperger’s. My husband shares this as well. We have been persecuted as parents because we do not “act” like other parents and do not communicate in the same manner. The schools see as indifferent or not caring about our children, when this is as far from the truth as you could get! The state thinks that we cannot be good parents because we have Asperger’s. They think that because we do not show emotions “like we should” that our children will suffer and not learn how to be “normal”. Which is funny, since growing up, I always thought I was the normal one, and the others were different!

8. BRAVO! I only learned that I have Aspergers’ after my grandson was diagnosed. I too have always had a way of telling liars from people telling the truth, and it always got me in trouble when I would tell them or someone else ” that is not true”, or “That is someone you can’t believe or trust”. It even happened with an Episcopal Priest who thought at times he was God…and he SAID that in a Sunday School class, but no one believed me when I said he was a faker… until he was found out and defrocked many years after. The same with a church secretary who I saw through on my first meeting,…she was all fuss and bother …and has just last month been arrested for embezeling the church’s money. Sometimes people should look at us as “gifted with insight” , not “disabled!” My grandson is the same, he sees through people who are in positions of authority for the wrong reasons and has had issues with one particular Boy Scout leader for years, because he has motives for his own sons’ advancement and not the others in the troop.He has achieved his Eagle in spite of this man , but it took some doing! We knew when he was repeating the question instead of answering it as a toddler he had some ” glitch” in him, but only when he was a Junior in high school, after all those years of talking to himself and being punished in school for it, did we find out it was Aspergers! Now we treat his ideosyncracies like ” just Jimmy” instead of as a ” condition”. I never knew I was anythingother than ” just me”, but I knew I was different from most other people. Aspergers does not have to be a ” handicap”. I agree more teachers and others ought to learn about us and accept us!

9. I am appalled that someone would equate a medical condition with a life style choice. Shame on you.

10. One line in your comment jumped right out at me: “Also with anxiety, we don’t disapoint him with things or try not to as he can not cope with that.” I can relate - I get incredibly anxious and ‘prickly’ when things don’t go my way. Little things that wouldn’t bother other people, I suppose. With life experience, I have learned to cope. I certainly don’t *like* to, but I do, and I feel I am a better person because I can. After all, disappointment is a part of life and we do ourselves no favours by avoiding it. Hopefully your son will learn this, too. @Stacy - See, that is exactly why I don’t go ’round telling people about my ‘condition’. People fear what they don’t understand, and most people don’t understand Asperger’s. @Sandy - I think you’ve completely missed the point. If you know anything about being gay (and I know a LOT about being gay *wink*), you can appreciate that there are some definite similarities in the EXPERIENCE of feeling inherently different from the rest of society. Some may argue further that homosexuality and autism are neither medical conditions nor ‘choices’, but I’m not gonna go there. To be honest, I think it’s great that everyone’s happy to be different, but acceptance works both ways. Wider society ought to appreciate our talents rather than trying to make us conform, and we need to learn to cope as best we can in a world that isn’t made for us. There are times where we NEED to do things we don’t like to do - like talk on the phone, talk to people, deal with disappointment - and do it in a competent, coherent way. The world is cruel, but we CAN cope!

11. Its Always good to hear from another persons point of view, especially when they may be like minded,I am especially encouraged to see another female aspie since my daughter is now 14 it was very hard to get any comparisions or insight into just how things will go but like Trudy and the other girls here , shes great very challenging ( but what 14 year old girl isnt , if they are not perhaps they are just good at lying …lol) as she always simply tells it like it is but as she is stabilising through these teen years which are hard for any person at all she extremely intelligent and always can think outside the box , can be helpful and loving in a way she;s comfortable with and often is just misconstrued as having a wicked sense of humour , the older she gets the more i learn from her as always she will tell me in no uncertain terms :)other people laugh at different things and so she wants to laugh at an old lady whose hair looks like a fluffy cloud so what ….? im just trying to battle with her to keep it down but i think she is like any other child trying to nestle into society because quite frankly, there are many “normal kids” and think thank god she doesnt carry on like that!!anyway I could waffle on all day but its great to hear from someone who has direct experience ( always the best in my view point) in to life further down the line. well done Trudy and good on you to all the rest of you who refuse not to stop being you just to conform.

12. Wow! Everyone, thank you so much for sharing. I am learning how to better understand and serve my 15 year old boy. I am gaining insight into the reasons and motives for the way he does things. Its like finding the key to a very important room - a room with the most important things in your life that you have been locked out of. My son’s ways have been a mystery to me. But your transparency and forthrightness has helped me tremendously. He was just diagnosed at 13 and since that time I have been searching out resources to help him to maximize the life God has given him. It seems that this message board is the best resource I have found so far. I wouldn’t compare homosexuality with a medical condition either. Yet I do get your point - noone should have to live a lie. What you have shared has given me so much insight into the motivations - reasons for the actions of my son. I have been greatly enlightened and with that enlightenment comes a sense of freedom to let him be himself. I am really starting to get it.

13. This is bang on. I have one question? Are there any women out there with aspergers going through the menopause? I’m struggling double time far more emotinally than physically. Thanks. Heidi

14. Thanks for the input people - this really helps! I find my son with Asperger’s has a wonderful gift of being able to “read” people and I LOVE IT!!! His impressions of people are spot on too!! lol

15. My son has aspergers and he has said the same thing he wishes that people understood what it feels like to be him i think my son is perfect and i fight for him in school to be treated like a person not a child that is stupid he is very bright. You’re message is very clear now if we could just get the people to understand it. After all we all have something different about us or a little quirk that we do.

16. Wow.... What a great explanation.

17. Thank you for this! It comes at the perfect time for me. I've had 2 well meaning friends tell me in the last day that my son will grow out of his asperger's, and I struggle to put in to words why this is not true, and more importantly, why I don't want him to lose who he is by pretending. Fitting in is only so relevant in this world, in my humble opinion, being true to oneself is imperative! 
18. This all makes perfect sense to me.. It amazes me how she can explain it all so clearly.. This is what we need to show people when introducing your Aspie child to someone new.. Hits the nail right on the head. 
19. Beautiful & so right on correct! Should be published

20. Thank you for posting this!! Insightful and very helpful in understanding!

21. So right!

22.  Interesting comments and points of view

23. I feel this heart break daily as I drop my son off at a summer program to "train him" to forcefully make eye contact...to maintain conversation....to sit on grass that makes him cringe....teaching him to be what "society expects from him" rather than teaching the world to embrace his differences. ~Someday.......someday~

24. That's a great analogy! Thank you for sharing x

25.  Nothing like hearing it from the horses mouth. Thanks so much for sharing.

26.  Great story! I love my aspie just the way she is! She is so unique!
 
 27. My 9 year old son was not managing in a remedial school environment. There were 12 children in his class, and he couldn't cope with the noise, sensory overstimulation, etc. Every day was exhausting and emotional for him. He wasn't able to learn anything 'academic'.  This year we decided to stop trying to push the academic side until he had more of an understanding of the social interactions used in daily life. He works one-on-one with therapists daily.  So, I ask... He wasn't able to learn in the environment we had him in. He was extremely unhappy. Is it wrong to give him tools to be able to have a two way conversation, and potentially friends?

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