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The Most Devastating Aspect of Teenage ASD - and How Parents Can Help

"My son, 17 y.o. with HFA, is no longer interested in trying to relate to his peers or do anything social. He says 'nobody' likes him. I would describe him as a recluse at this point. Is this something I should be concerned about, or just let him do his thing, which appears to me to be a very lonely way to live.?"

Peer-group rejection occurs when a person is deliberately excluded from social relationships among his or her age group. Unfortunately, this phenomenon is common for teens with Asperger’s (AS) and High-Functioning Autism (HFA).

Research dealing with the implications of peer-group rejection on later development suggest that AS and HFA teens experiencing continuous rejection often experience a decline in their self-image, a state of despair, behavioral difficulties, loneliness and seclusion – and in some cases, serious emotional disturbances.

AS and HFA teens who experience peer-group rejection often choose to isolate themselves, which makes a bad problem worse. Here are some of the common reasons for isolation:
  • A depressed adolescent loses interest in everyday activities and drops out of social groups at school. Depression is a Catch-22. It can cause isolation, but may also come from a lack of social interaction. For example, Michael (diagnosed with Asperger’s) was depressed when his attempts to fit-in with the boys in his class always backfired. They were sports-minded, but Jack was more artistic. He was mocked by his male peers for his “weird” artwork and eventually stopped trying to win their friendship. Over a period of weeks, he became depressed and began to isolate.
  • An adolescent who feels rejected may spend too much time on social networking sites and lose touch with peers. He or she may replace genuine social interaction with chat rooms and conversations with strangers. Adolescents who interact online lose out on genuine social interaction. For example, Craig (diagnosed with High-Functioning Autism) was a computer geek who spent hours chatting online. After months of this, his social skills were under-developed and his understanding of face-to-face interaction was damaged by hours upon hours of Internet use.
  • Moodiness and erratic behavior can drive an AS or HFA adolescent away from his peers.
  • Shyness can be a cause of social isolation.
  • Many young people on the autism spectrum have one particular “special interest,” and may engage in – and talk about – that interest to the exclusion of all other social activities and conversations. For example, Josh was diagnosed with Asperger’s at age 8. He had a particular interest in trains and train schedules, but his classmates found his incessant talk about them boring. They eventually left him out of social activities, which made him feel socially clumsy and unwanted – and resulted in isolation.
  • Some AS and HFA adolescents may be ostracized by their peers because they either excel academically or underachieve. Fitting-in is important to teens, but those who stand out are often pushed to the fringes of social groups.



Though most want to be accepted by their peers, AS and HFA teens tend to be very hurt and frustrated by their lack of social competency. Their inability to “connect" to others is made worse by the negative feedback that they receive from their painful social interactions (e.g., bullying, teasing, rejection, etc.). The worse they perform socially, the more negative feedback they get from their friends and classmates, so the worse they feel and perform. Due to this consistent negative social feedback, many of these “special needs” teens feel depressed, anxious and angry, which just compounds their social difficulties by further paralyzing them in social situations. In addition, although negative behaviors often lead to peer-group rejection, the reverse is also sometimes true (i.e., being ostracized can bring out the worst in AS and HFA teens, which leads to even more ridicule and rejection).

==> Discipline for Defiant Asperger's and High-Functioning Autistic Teens

The AS or HFA teen can be rejected on an individual basis, or by an entire peer-group. In addition, rejection can be either “active” (e.g., bullying, teasing, ridiculing, etc.) or “passive” (e.g., being ignored, getting the silent treatment, etc.). Some level of rejection is an inevitable part of life for all teens. However, it can become a serious problem when it is prolonged or consistent, when the relationship is important, or when the teen is highly sensitive to being rejected. Furthermore, the experience of peer-group rejection often leads to a number of adverse psychological consequences (e.g., aggression, anxiety, depression, feelings of insecurity, heightened sensitivity to future rejection, school refusal, loneliness, low self-esteem, and even suicidal ideation).

Research reveals that most teens who are rejected by their peers display one or more of the following behavioral patterns:
  • high rates of aggressive or disruptive behavior
  • high rates of inattentive, immature, or impulsive behavior
  • high rates of social anxiety
  • increased preference for solitary activities (e.g., playing video games)
  • low rates of prosocial behavior (e.g., engaging in meaningful conversation, sharing, etc.)

One of the strongest effects of sustained peer-group rejection is “global impairment” (i.e., impairment across several domains, including behavior, emotions, social relationships, and involvement in activities). Studies suggest that long-term peer-group rejection is consistently associated with problems in (a) relationships (e.g., peers, siblings, and adults other than parents), (b) emotions (e.g., feeling unhappy or sad, not having fun, feeling nervous or afraid), (c) behavior at home, and (d) low involvement in activities (e.g., sports and hobbies).

Additional research on peer-group rejection reveals the following:
  • “Active rejection” (e.g., bullying, teasing, ridiculing, etc.) is more stable, more harmful, and more likely to persist after the teen transfers to another school.
  • An analysis of 15 school shootings between 1995 and 2001 found that peer-group rejection was present in all but two of the cases (87%). The documented rejection experiences included both acute and chronic rejection, and frequently took the form of ostracism and bullying. The researchers assert that although it is likely that the rejection experiences contributed to the school shootings, other factors were also present (e.g., depression, poor impulse control, etc.).
  • Peer-group rejection, once established, tends to be stable over time, and thus difficult for the AS or HFA teen to overcome. 
  • Rejected teens are likely to have lower self-esteem, and to be at greater risk for “internalizing” problems (e.g., depression).
  • Some rejected teens display “externalizing” behavior and show aggression (acting-out) rather than depression (acting-in). 
  • Teens with developmental disabilities are more likely to be rejected, and this rejection may lead to a negative developmental cycle that worsens with time (i.e., their emotional growth becomes stunted).
  • Rejected teens are more likely to be bullied.
  • Peer-group rejection is believed to be less damaging for teens with at least one close friend.

For the AS or HFA teen who has poor social skills or struggles to build friendships, the idea of interaction with peers is extremely unappealing. Many of these young people can’t think of anything they would hate more than being “forced” to be outgoing. Who can blame them? Nobody enjoys doing things they “suck” at.

The bottom line is this: AS and HFA teens have a “developmental disability,” which simply means that their emotional age is much younger than their chronological age. So, for example, your 16-year-old AS or HFA son is emotionally more like a 12-year-old – yet he is thrown in with a bunch of 16-year-old classmates. Thus, the odds are high that he has already had numerous uncomfortable peer-encounters at school. You can see why the critically important skill (i.e., the ability to engage in age-appropriate social interaction) needed in the teenage years may be the one thing that the AS or HFA teen associates with failure.

==> Discipline for Defiant Asperger's and High-Functioning Autistic Teens

The Good News—

Here are several crucial steps that parents and teachers can take to help the AS or HFA teen to deal with rejection:

1. With or without an autism spectrum disorder, most teens become less willing to take a parent’s word or advice. Thus, parents need to hook-up their “special needs” teenagers with other trustworthy adults. If you want your teen to learn or try to do something, arrange for the suggestion or information to come from a trusted adult other than you, the parent. For example, handpick your teen’s guidance counselor, or look for other good mentors (e.g., uncle, scout or youth group leader, psychologist, social worker, peer mentor, “Big Brother,” social skills group leader, weight room coach, martial arts teacher, etc.).

2. Special interests may change, but whatever the current one is, it remains an important aspect of motivation, pleasure, relaxation, and reassurance for the “special needs” teen. So, as long as it isn't creating additional problems, allow your teen to engage in his special interest.

3. Side-by-side conversations (e.g., while walking or driving in the car) about the “issues of the day” may be more comfortable for your teen than talking face-to-face.



4. Seek out activity-based, practical social skills groups designed especially for AS and HFA teens. Participating in such a group, being accepted by group leaders and peers, is probably the most powerful way to allay a teen’s potential despair at not fitting-in socially and not having any friends.

5. Schedule regular monthly educational team meetings to monitor your teen’s progress, to ensure that the IEP is being faithfully carried out, and to modify it if necessary. Because AS and HFA teens can be so volatile or fragile, and because so many important things must be accomplished in 4 short years of high school, these meetings are crucial.

6. Remember that teens on the spectrum are relatively immature (socially and emotionally) compared to “typical” teens of the same chronological age. Imagine sending a 10-year-old girl off to high school (even if she is chronologically 15), or putting a 13-year-old boy behind the wheel of car (even if he has a chronological age of 18), or sending a 16-year-old off to college or the Navy. We need to adjust our expectations for teens on the autism spectrum – and make sure they still have appropriate supports.

7. Look for volunteer activities or part time jobs at the high school or in the community. Be persistent in asking the school to provide help in the areas of career assessment, job readiness skills, and internships or volunteer opportunities.

8. Look for opportunities for a sheltered, successful overnight stay away from home with no parent (e.g., long weekend visits to relatives, a week or two of a carefully chosen sleep-away camp, taking a course on a college campus, etc.).

==> Discipline for Defiant Asperger's and High-Functioning Autistic Teens

9. If you have not talked to your teen about autism spectrum disorders, you or someone else should do so, to the extent that your teen is ready to hear it. It’s difficult for AS and HFA teens, because they so much want to be “normal” and successful. A diagnosis can seem threatening – or even totally unacceptable. In truth, however, the adults with AS and HFA who do best are those who know themselves well – both their own strengths, which point them toward finding their niche in the world, and their own blind spots where they need to learn new skills or seek out specific kinds of help.

10. Have realistic, modest goals for what your teen or the family can accomplish in a given time period. You may need to postpone some plans for career goals, trips, culture or recreation.

11. Go with the flow of your teen’s nature. Simplify schedules and routines, streamline possessions and furnishings. If, for example, your teen only likes plain T-shirts without collars or buttons, buy them. If she likes familiar foods or has a favorite restaurant, indulge her.

12. Even for a previously well-adjusted teen, multiple stressors during the teenage years may bring on anxiety and depression. Stressors include increased academic/abstract thinking and social demands at school, peer pressure, increased social awareness, and fears of the future. Highly anxious teens who do not get professional help may be at risk for school failure, acting-out, alcohol and substance abuse, and even suicide attempts. Seek the assistance of a child and adolescent psychiatrist who specializes in autism spectrum disorders.

13. Build and use any support networks you can (e.g., extended family, close friends, church/synagogue groups, empathetic school staff, etc.). If you don’t have a good network, consider individual or family therapy for some support during a stormy, demanding life passage.

14. Boys on the autism spectrum may need to spend increased amounts of time with their fathers, and/or other male role models as they undertake to become men. If dad has taken a back seat, let him know his son really needs his attention now. If you are a single mother, look especially hard for male mentors at your son’s school or in the wider community.

15. Although most teens with AS and HFA are more docile and child-like, be prepared to tolerate/ignore considerable distancing, surliness, or acting out, knowing that it won’t last forever. At the same time, set some firm limits, and keep a close eye on your teen’s welfare.

16. Teens with AS and HFA are less prepared than “typical” teens for the new challenges of sexuality and romance. Some are oblivious, while others want a girl or boy friend, but are clueless about how to form and maintain a relationship. Boys especially may be at risk for accusations of harassment, and girls especially at risk for becoming victims. Teach appropriate rules, or see that another adult does. Look for supervised activities in which boys and girls can socialize safely together, supervised by a staff person who knows about autism spectrum disorders and can coach appropriate social skills.

17. Teens on the spectrum need to learn when to ask for help, from whom, and how. It’s very helpful to have someone such as a trusted guidance counselor whose door is always open, and who can coach your teen in problem solving.

Adolescent culture is social by nature. Teens tend to move around in groups of people their own age. Thus, an adolescent who is isolated, either by chance or choice, is at a distinct disadvantage – and is often treated as an outcast. The effects of rejection and isolation on an AS or HFA adolescent can be long-lasting and create problems that moms and dads need to address. By using the steps listed above, parents can help their “special needs” teen (a) overcome the negative effects of peer-group rejection, (b) learn critical social skills, and (c) gain the self-confidence needed thrive as an adult.

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

 COMMENTS:

•    Anonymous said... I have a twenty year old who was excluded and teased when he was 15. The wound still exist. In college he still does not want friends and only interacts with video game faceless friends. I gave him therapy, support and love. The heart never forgets this pain. I believe this bulling by the next door neighbor boy is something he got over at some level. His social life consist of video gaming. Gaming just feels easier and safer to socially interact with others. Without games he would be alone?
•    Anonymous said... I have a very lonely, sad 16 yr old
•    Anonymous said... I understand. My son is 15 and i put him in a charter school. He did a shadow tour and told me he wanted to ho there. The school has been very supportive and he's met a few friends. Of course, they had tp approach him.
•    Anonymous said... It's heartbreaking seeing my 14 year old son with no friends...even worse was the constant bullying
•    Anonymous said... The same with my 12 year old
•    Anonymous said... Try finding other small groups or hobby clubs of people with the same interest as your child, a place where they feel they can fit in and belong and have confidence because it is an area of expertise. Through the common shared interest, they can find a social outlet. Check into gaming stores, sometimes they have meetings for those interested in certain games: video games, card games, comic books, etc.
•    Anonymous said... very true
•    Anonymous said… Great advice, tina...gaming clubs, etc.
•    Anonymous said... I am leery of the gaming stores... When I was in NYC we paid a visit to the Nintendo store and what really concerned me was the zombie nature of several grown men around a large white table playing Nintendo games well into the night. I am all for being social, but these men were not being social with each other. It was very off putting and I strongly believe would aid in furthering my son's avoidance behavior. I honestly left concerned...
•    Anonymous said... My son is 17. He has never had what most would call a friend. He has had peers who supported him and allowed him to safely socialize with them which he prefers to act however he wants and talk about whatever he wants while his peers tolerate him but .. that isn't real and I don't know how to help. He graduates from high school this year and .. what happens next? He doesn't have the maturity to study/participate in college and his math deficit and desire to build machines, tanks, firetruscks, sirens, etc doesn't lend itself to any jobs so .. just kinda lost.
•    Anonymous said... This breaks my heart.
•    Anonymous said... we have a 16 year old with similar theme!
•    Anonymous said… My aspie 17 year old seems to be completely oblivious to how much he gets left out. He will follow people around, talking at them, and even continue talking after they turn around and ignore him. He goes to a private school with a higher number of ADHD and special needs kids, and we worship at a mega church. Both places have plenty of nice people who will listen (or pretend to listen) to his non-stop monologues about machinery. The church people especially try to befriend him, but he wants an audience for his monologues, not conversations, so they don't really know how to connect. They tell me what a neat kid he is, though. So, while he still ends up with no one who wants to invite him to hang out on weekends, he feels like he's incredibly popular and well liked since someone among the hundreds in the room will always be willing to hear his unending list of machinery factoids. It's when he's home that he's unhappy, because there is just so much we can handle hearing before we tell him to hush and try to teach him social skills. He gets angry and lashes out, simply because I tell him to try to listen to his siblings or participate in what the family is doing. So it's not being left out that bothers him - it's not being able to treat people as his audience and he's not treated like the star he knows himself to be that really ticks him off.
•    Anonymous said… Just to pick up on the gaming group comment. I can see how it would not be interactive. However, when my son was 13 - 15 he would go to CARD game tournaments (you don't have to take part in the actual tournament) It would lift my heart to see loads of like minded kids chatting and laughing in a way he never did with any other people. Sadly he grew out of the card game phase but I believe it taught him he will not always be lonely.

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By

From Anxiety to Anger to Meltdown: An Aspergers Dilemma

Can an Aspergers child’s anxiety play out as anger, and then morph to a meltdown?  Watch this video to find out:





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Finding Hidden Meaning Behind Problematic Behaviors in Children on the Autism Spectrum

Many parents of kids with Asperger’s and High-Functioning Autism have discovered that some of their youngster’s behaviors make no obvious sense and do not serve any clear purpose. But when these kids engage in “odd” or confusing behavior, they are also sending the parent hidden clues about things that are important to them. Thus, it’s the parent’s job is to break the code so she can interpret the clues.

By becoming more like a “detective,” you can begin to notice coded messages you didn’t see before, and as a result, find more effective ways to help your “special needs” youngster.

Click here for the full article...



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The Importance of Early Therapeutic Intervention for Children on the Autism Spectrum

Early intervention is key to optimal outcomes for children with AS and HFA. There's little doubt that young people on the spectrum who undergo therapy at an early age, be it behavioral or developmental, do better than kids who don't. And there's no good reason for parents to wait to provide such therapy.

Even a little progress is far better than none, especially when that progress comes in the form of new social skills that allow the special needs child to “fit-in” with his peer-group. While early intervention is extremely important, intervention at any age can be helpful.

Click here for the full article...




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Asperger's and High-Functioning Autistic Children Who Hate Grooming and Personal Hygiene: Tips for Parents

“I'm ready to explode! My son is 7 and is autistic (high functioning). He absolutely stinks. His bedroom is a bomb site, he won't clean it. I am not allowed to clean it, he opens the door and the whole house smells if he does. He doesn't allow me to go in his room for his clothes. He won't bring his clothes down without an argument. He refuses to take a shower, won’t brush his teeth. I can't take it anymore. I went in his room this morning, found empty yogurt containers under his mattress. Clothes stuffed everywhere. I flung it all on the floor. If he wants to live like that, fair enough - but not here under my roof. I have had it.”

A common trait among children on the autism spectrum is the dislike of grooming and personal hygiene. Personal hygiene is often a very sensitive topic to discuss with a “resistant” Asperger’s or high-functioning autistic child like your son. Nonetheless, it is important to instill good hygiene practices early on to prevent cavities, infections, and other health problems. Your son must also feel safe discussing this topic with you, especially as he begins to go through puberty.



There are numerous ways to teach personal hygiene to “special needs” kids. In most cases, parents need to explain how germs work, develop a hygiene plan – and most importantly, make good hygiene fun! Making hygiene fun rather than a boring “chore” is key!! Be creative. Here are a few important tips to get you started:

1. Use visual demonstrations to teach your son about germs. To demonstrate how people transfer germs, try a chalk experiment. First, recruit the help of his sibling(s) or a couple of his friends. Get a box and fill it with chalk powder. Dip your hand in it and shake hands with your son and ask him to shake hands with the other kids. All of them have powder on their hands, having just come from the initial dip. Then explain saying that germs also spread in a similar fashion. This visual explanation may do more than any words to help you show the problem to your son. Lastly, teach your son the steps of hand-washing immediately after explaining this transfer of germs: (1) wet your hands, (2) apply soap, (3) lather the soap, (4) rub your hands for at least 20 seconds, (5) rinse them, and (6) dry them. Also, teach you son a 20-second song to sing to himself while he washes his hands. For example, a song like "Happy Birthday to You," can help him to scrub his hands clean for the allotted time. Sing with him the first few times.

2. Make use social stories to teach personal hygiene (click here to learn how).

3.  You say you want to teach your son to groom himself? There's an app for that! Download Pepi Bath to get started. It will allow your son to choose a character and role play (e.g., putting clothes in the washer, washing hands, shampooing hair, using the shower, etc.) in a fun and engaging way. Relax and let his favorite character teach him about the importance of proper hygiene.        

4.  Another great way to engage your child in his own grooming is to pump-up the excitement for the chore by adding some incentive. It can be as simple as a brand new bath toy, a cool light-up tooth brush, toothpaste in his favorite flavor, etc. It won’t take much to make the mundane magical.

5.  Create a “behavior chart” (click here to learn how) where your son can earn a reward for practicing proper hygiene. For instance, if he remembers to take a shower in the morning, he could earn extra computer-game time before bed that evening.

6.  Consider your son’s perspective. For example, try sitting him down at a relatively calm time and ask, “What’s the reason you don’t want to brush your teeth? What don’t you like about that?” The goal here is to identify what problem your son is trying to solve by not brushing his teeth. For example, does he have oral sensitivities (i.e., dislikes the feeling of the bristles in the tooth brush, dislikes the taste of the toothpaste, etc.)? Discuss what’s going on and talk with him about how he can solve this problem differently so that he can take care of himself. Then, after addressing the teeth brushing issue, move on to the next issue (e.g., why he doesn’t want to keep his room clean).

Additional tips to help children on the autism spectrum with good personal hygiene habits and organizational skills can be found here:

No parent wants their youngster to be “smelly” or “dirty,” but convincing such a child of the importance of brushing his teeth and washing his body can be tricky and frustrating. To a “special needs” child, hygiene often seems like an unwanted and unnecessary chore. But here’s the bottom line: Your son will always make his own choices – no matter what. As long as you are problem-solving with him, making personal hygiene as fun as possible, using rewards and consequences to motivate him and hold him accountable, and supplying him with the necessary “tools” to take care of himself, that’s the best you can do!




COMMENTS:

•    Anonymous said... And rewards for it. Make them things he REALLY likes though!
•    Anonymous said... Can you get an ABA therapist to work with him thru your insurance.
•    Anonymous said... Clean it for him... But...... With trash bags. It might help to do this while he is not home. Yes, there will be a melt down. I have found that sometimes aspire kids need tough parenting. Clear it out, save anything that is expensive or you can't part with. Mine has done better since she started junior high, and her peers have helped some with their comments. They will think they are the boss, and pick your battles. Health wise this is one you have to win.
•    Anonymous said... Could you try a bath? Or even regular swimming sessions (public pools are full of chlorine).
•    Anonymous said... Do a social story about it...emphasing the way it makes others in the house feel.
Maybe try printing a cleaning schedule...use lots of pictures to do this.
•    Anonymous said... Get a shower head with different settings and keep at it...
•    Anonymous said... I always find visual routine charts and visual checklists where he can move the pieces across for EVERYTHING help the best with my 8 year old after a while it just becomes a new habit and the arguments disappear also with the food in the room its a tough one a battle we still are tackling good luck
Also I cleared out his room and made it into his favourite theme (without him there) a mine craft room he seems to care more because it's his special space and revolves around on of his passions
•    Anonymous said... I feel for u my 12 year old drives me nuts with this same issue. I think we just need to take deep breaths and tidy on the sly so they don't have to much of a meltdown when they see you've cleaned up.
•    Anonymous said... I found that a picture of what the end result looks like and support for the problem solving helped. We also have an independance cup that if there is any spontaneous initiative i casually toss money in and this works better than a ritualized reward system. That seems to help, especially when he was apprised of how money could float out of it too...lol, but in the end, the seven year old needs to learn that mom is the highest ranking official in the outfit, just like any kid, you just have to figure out ways to make the expectation understandable and stick to it. Good luck to all! Dontcha just wish for one day you could only have to worry about what everybody else gets to worry about. Give me a busy sports schedule any day!
•    Anonymous said... I get it! I have 2 on the spectrum. I will say this- we are the parents- there is no 'I can't' or 'am not allowed to'. My house, my expectations. Yes it may cause a meltdown, but you can support them through it. Once it gets cleaned up- set up and continue with the expectation so it doesn't get as bad again. Our ASD worker always says- it may explain the behaviour but does not excuse it.
•    Anonymous said... I get strange looks when I say that my 14 yr old autistic daughter seems to thrive on chaos. Her room is like a bomb-site most of the time and I realised, eventually, that she just doesn't see the mess. I don't reproach her, I generally make the odd sarcastic remark (she can now understand sarcasm a bit bitter) and she's not too bothered when I clean it up every now and again. I've found the the personal hygiene issues have evolved and she's now ok about showering every day and (a huge result) brushing her teeth.
•    Anonymous said... I have 7 yr old as well.. Although he doesn't have this much of a distaste for hygiene he does have some diffculty with it.. for him I believe it is the overwhelmingness of the steps it takes.. Clean your room won't work... but if I ask him to bring me all clothes on the floor.. that works. Or any books back on shelf.. One item at a time and not all at the same time of day... If we seperate it out through the day by evening we have a clean room. Bathing... he has a big problem with water getting in eyes or ears... I starting teaching him steps.. first time i only made him do the step one.. but I continued on and stated each step... 1. Get your hair wet.. 2.. pump soap onto palm..3 rub hands together.... 4. rub soap on hair.. 5. rinse hair 3 times. because of the water in eyes thing I bought a cheap plastic pitcher and plastic visor. He fills up the pitcher and wets his hair this way now... After one week he is able to do all 5 steps himself I do list them off but much improvement!
•    Anonymous said... I have a very messy and smelly boy aswell. We introduced showers every other day for a week or two then everyday. One step at a time with cleaning the room works well. We also have star charts which have worked for us.
•    Anonymous said... I have the same problem with my child and she is 17. I have to tell her to brush her teeth or she never will and telling her does not always mean that she will do it. Her room is cluttered with food containers and bags also. She smells like sweat and she wears the same thing ever single day and won't let me wash it very often. When she was in school she took really good care of herself but now that she is home all day she has no interest in hygiene or how she looks. I feel your pain but I know from experience that threats don't work. The only thing that has ever helped is taking away a privilege or a toy. I take away her allowance if she won't clean her room after being asked for several days.
•    Anonymous said... I KNOW the feeling!!! Mine is the same.. I desperately want to contain the mes to one room as currently she shares with her sister, but neither of them want to swap with their younger sister who is less messy! Its not about the mess its about control over her stuff and her space and her sense of being her. We cannot or dare not touch it because we are violating her space and that is special to her. For the sake of as much family harmony as we can we ride it out and just say ok go tidy your rooms, your responsibility, if you dont want us to do it with a black bag, you do it or no computer/wii or tv for the weekend. That usually works, except when there is a lego/dinosaur/minecraft project thing happening on the floor so we leave it alone. Its very very hard work at the moment so I totally sympathize xxx
•    Anonymous said... Important: somehow the room must be cleaned. I let my son's room go for too long, and when I finally could clean it, it was infested with bed bugs. Its a miracle the whole house wasnt infested. It took tons of work, 2,000 dollars, 2 months to finally get rid of all the bedbugs. we had to throw a lot of things away.
•    Anonymous said... introduce a routine, some people need a visual routine, each step has a picture next to it. Try & use pictures of your own towels, bathroom etc. You can use individual tasks broken down into tasks & also try a now & next planner (depending on how many steps your son can comfortably deal with). In the mornings you could put shower on now & breakfast on next & explain that the planner won't move on until he has completed the now task (be prepared for possible meltdowns when introducing the new planner until he understands that things won't be rushed on). You could introduce room clean to the planner on a weekend day & have a breakdown of the steps for what is expected in cleaning his room (x change bedsheets, x Hoover floor etc etc)
•    Anonymous said... Kids need an obvious incentive. You have to answer the question "what's in it for me?". Be creative. If you can't come up with anything, then bribe him. First he'll do it for the bribes, but as he gets older, you can ween him off of them. If likes rules, then make rules like "no food in your room", "no clothes on your floor". Post a list of rules on the wall. Give rewards for following them. I wouldn't reward for the act of cleaning. I would give a daily reward if the room is clean. And a daily reward if teeth were brushed, shower taken, and whatever else you want him to do every day. Maybe use stickers or poker chips. Collect enough and trade them in for something big. I wouldn't use candy for a bribe though - sometimes the artificial ingredients in candy can make symptoms worse.
•    Anonymous said... My 12 yr old was finally told yesterday that he's got Aspergers after waiting 6 yrs. His room smells but only because he doesn't like the window open & he sweats as he's always on his console but his room is spotless. He keeps everything in order & when he's up at 6 every school morning he always shouts down "Just tidying my room".He opens his curtains, makes his bed up,brings down any plates & cups & puts his washing in the machine. Guess I'm lucky on that score but the shower bits a nightmare. He would refuse to have one but i say if he doesn't have one every other day he's banned off his console & I'd hide his controller
•    Anonymous said... My daughter is on the spectrum. Altho her room was clean, her self clean was another issue. She had matts in her hair, smelled, and showers were a battle. I got around the hair issue by cutting it short, ( the choice was given to her, either brush it or cut it). She's 23 now and the shower is still an issue. I'm not sure there is a fix all for this one.
•    Anonymous said... My oldest was the same way. We just had to start a routine where he showered every other day. It was a fight at first but just sticking with it after about 21 days the fights weren't there. Same with the room. We have a laundry system and that is where the clothes go to and if his room isn't clean we won't tuck him into bed. It takes a while to to build a good routine with a kid with aspergers but it does work.
•    Anonymous said... My son is 20 and we have tried everything under the son. He won't clean his room, and often puts on dirty clothing. Help!!
•    Anonymous said... My son is now 15 and he still struggles with this, but he's getting better. I had to figure out early on what I was willing to compromise with, what I wanted to battle, and what I didn't. I found that most of the time, if left to himself, he becomes (even now) overwhelmed with what needs to be done. So, I create a list and he has to do a few things from it each day, that way, he doesn't get overwhelmed but some things get done as well. One time, when we moved, my sister and I found 20 bottles of water (half gone) under his bed and lots and lots of wrappers (gum, pop tarts, etc). We just made sure we packed his room when he was at his Dad's. lol
•    Anonymous said... My son was the same and he is 8 now, I use reverse psychology on him, when he thinks I don't care and I give him a blasé attitude it changes everything, mind you his room still doesn't stay clean for long and showering is only done if I run a bath, it has to be hot and full or he won't get in, I just pick my battles, just work on the rubbish and dirty clothes and ignore the rest, Aspergers kids tend to like their rooms messy its how they know where everything is lol
•    Anonymous said... My two are 16 and 13 years old, same deal they don't clean and their rooms it looks like an they could be on the show hoarderds..I go in and clean their rooms once a month when they are at schooL. They freek out about it when they get home. lol. As for showre my kids didn't know how to turn the shower on under the age of 12 so I would turn it on and tell them to leave it running so the next one would get in, they also tipped all the shampoos out and push the soap in to the drains yes even at 12, now over 12 if they refuse to have a shower I tell them that is fine as long as they don't go anymore than 2-3 days with out a shower And they still don't clean their rooms.
•    Anonymous said... Showers can also be a sensory issue. The water feels like needles raining down on my daughter, causing pain. But she loves baths. Bath bombs and bubbles and being allowed to read before she has to wash. She'll always remember to do her teeth in the bath too. She's 15 and it took me years to get here but she's been so clean now for years. Find out why the shower is a problem. As for 'tidy your room' - way too general. Short, individual tasks, written down if necessary, are much easier. Meltdowns can come from panic of not understanding why you are cross with them and what they are supposed to do.
•    Anonymous said... The way we do it in our house is assigned chores and personal hygiene have to get done before screen time. I give explicit instructions and the kids have specific chores for each day of the week. My 10 year old son (who is the one on the spectrum) has come to appreciate the routine and will get up and shower, do his laundry, etc. on the proper day without being told.
•    Anonymous said... Try make it as part of routeen, slowly add it in to his days, get up make the bed, pjs in the wash basket, after he has done all those things reward him with TV time or something he likes a sticker chart works for zach but do this slowly I did, and he now gets up at half six has a tidy room clothes in washing basket dresses him self ok I lay them out, same with breakfast he brushes his teeth then gets his shoes on then reward time, but slowly is the key he will get used to it x but be prepared for melt downs xxx
•    Anonymous said... We have had similar problems but a bath is easier as they don't need to get their eyes wet and you don't need to wash their hair every time, alternatively if it had to be a shower we used to let our son wear his swimming goggles as this helped to solve the water in the eyes issue. I agree with the others that you must put your foot down and just go with the meltdown for both the bath and the room a few times, use individual instructions for the room as I have always found it's better to break the tasks down and give a reward at the end regardless of the arguing whilst the task is being performed, the more you do these things the less the resistance will be each time as he realises that he will have to do it anyway whether he delays things by refusing or not.
•    Anonymous said... You will set yourself up for long years of at seven years old he has that kind of control. Will there be a melt down YES but that's when you help him learn to work thru it. Use it as an opportunity for him to see that if he wants you to leave his space alone then it needs to be maintained to a certain standard. My oldest currently has an empty room except for his bed a night stand and his night light. He couldn't stop messing with his toys. So those were taken out. He couldn't stop messing with his dressers so those left the room as well. Good luck! It's all trail and error but never give up!
•    Anonymous said…  I removed the door, put everything in the centre and took away all items that were first world 'nice to haves'. I then committed to work with her to clean it and stick to my guns that my house rules did not allow for unhygienic practices. As the behaviour changed so did the return of belongings and the door. Be prepared to walk alongside this area for many years to come. Mine has now left home and made great head way here.
•    Anonymous said…  My Ry (pre dx) was the same ... We worked with a behaviorist and rewarded for when she would shower brush her teeth go to sleep and sleep all night. She is now 15 and takes to many showers lol the water is her soothe when things are rough. I don't miss those early years and the constant meltdowns and tantrums we couldn't even leave the house to go to the grocery store ... Just clean it I threatened to throw her in the shower with me to make sure she was clean and therapy therapy therapy!! Good luck!!
•    Anonymous said… A true aspie 7 year old would have a major meltdown lasting into the night if you touched his room while at school. I know mine would of. His Dr. told me a long time ago to pick my battles of what is important and let the rest go. The shower thing maybe is important and the food containers to keep bugs away, but as far as how he treats is personal items, that should be up to him. It is his stuff, let him take care of it how he sees fit and if something precious is lost or broken he will learn, or not care. My son usually doesnt understand that he should be upset with loss or punishment. My son thankfully likes a neat room, except likes to eat in there(cannot tolerate eating meals with others), provide a trashbag to help contain the mess somewhat.
•    Anonymous said… ABA or professional behavioral intervention
•    Anonymous said… All those above help--but, remember--sometimes teenage boys smell. They just do (neuro-typical or not). It took about 2 years before my son started improving..
•    Anonymous said… Also I would take everything that he likes out of his room and tell him he could have it back when he is more responsible if he has a total meltdown so be it
•    Anonymous said… Applied Behavioral Analysis is a behavioral therapy generally provided in home where a therapist can identify behaviors that need to be changed or modified and comes up with a treatment plan to accomplish these goals
•    Anonymous said… Better to deal with it now than when he's older. My son is almost 20 and the battles continue. However we do have ground rules. No food in the room for starters-don't want critters. Then we have choices-either you put your dirty clothes in the laundry or I will help you to do it. Also try to focus on one thing at a time. Clean your room can be extremely overwhelming-the old can't see the forest for the trees adage. Try to focus on pick up dirty clothes. Then next focus on picking up trash. Then focus on making bed etc. Charts never worked nor did taking away privileges such as electronics. Your son may have a 'currency' that will work or not. My son does not see anything wrong with not brushing his teeth or showering. He even says "I know you want me to shower but I don't have a problem with how I smell". So I hear your frustration. We finally found a system that works for him. We let him pick a time that works for him within a set boundary. For example we say "You need a shower. Bed time us at 11. You need to shower before 11. What time works for you?" He picks a time. Then we hold him accountable. "It's almost 7. You said you would shower at 7. Do you have everything ready?" This reminds him to get ready and that it was his chosen time. hope you find what works for your son. I have also taken out stocks in Febreeze for those times when it gets to be too much. He hates that so it also gets him to clean lol. Win win for me. Good luck
•    Anonymous said… Can you "plant" some ants in his room. Hopefully, it will freak him out. Then you can explain to him they are drawn to crumbs and dirt. The only way to get rid of them,and keep them away, is to do thorough cleaning and removing all trash and stinky things. This worked for my tween (although I didn't have to plant the ants. They found his stashed food all by themselves)
•    Anonymous said… can you please tell me what ABA is. My son was just recently diagnosed so I'm a little lost on everything I need to know. Thank you.
•    Anonymous said… Clean it while he's at school.
•    Anonymous said… Does he like the pool or to squirted with the hose?
•    Anonymous said… Fortunately, my Aspie has a sense of humor. And he is obsessively neat. However, I could picture myself pulling the garden hose into his room and giving him one last chance before I blast it! LOL. I know you are totally frustrated...I'm just trying to make you smile.
•    Anonymous said… From 21, 19 & 16yo (Aspie) Mom who's been there:
#1 - Logic wins out over emotion with Aspie, every time. #2 - "You gotta do what you gotta do to get to do what you want to do..." Sure you can play on the Xbox, AFTER you do... (Very specific, easily accomplished task-- break it down.) #3 - we have taken bedroom door off hinges, had to earn that privilege back. #4 - I would go in with a big box or trash bag and collect everything up for giveaway (or trash). I would negotiate return of specific items if we agreed on the terms calmly and rationally. Note: #3 and #4 only ever one time, between the 3 kids. They took it seriously! You have to stay calm and rational, with a sense of humor. We all survived-- good luck!
•    Anonymous said… Give a choice. Tell him we will clean it together or I can clean it? There will be a meltdown so get ready for it. He's the child. In life outside your house things won't be easy so he has to learn now how things work. Have less things in his room. Could be too much to deal with.
•    Anonymous said… He is not an adult... He needs to follow rules now ... House rules just like he follows rules at school.
•    Anonymous said… He's 7. Even if he were neuro-typical he's not anything like old enough to be responsible for cleaning his room. At ten you can start expecting that, but only after years of step-by-step, non-emotional, side-by-side helping.
•    Anonymous said… I agree sorry... He is seven, teach him.... maybe do it the first time because by now its way too caotic and hard for him at the state its in... then just help him keep on top of it everyday clean it up.... Parenting is hard and repetitive but it comes down to he is 7 and you are the parent! Parent him now before you lose all of his respect completely!
•    Anonymous said… I checked most boxes on this! I just go into the room every three months and do it for him/her 14/12 (his sister has Asperger too) and I'm past asking the shower, I say go and have one! ...
•    Anonymous said… i feel for you. its soo frustrating. my grandson 20 is and was so similar except for the mess in his room, but changing of clothes brushing teeth showering staying up all night doing nothing for himself. etc. etc.some of it has changed but still needs more improofment. he stresses all of us out.n
•    Anonymous said… I have the exact same problem with my 13 year old son. I have tried everything. We don't allow food up in his room but, he still gets it up there anyways. We have tried charts, reasoning, threating,working for his computer. You name it we tried it. Any other suggestions would be great!
•    Anonymous said… I'm so glad I'm not alone in this our son trashes his room all the time he just can't keep it clean or tidy and hates for us to do anything in there I'm always saying , crack a window it stinks in here , he's only 10
•    Anonymous said… It actually makes me giggle how familiar this story is! Except the chart thing. Charts have never worked for my son. I have to use the 'reward good behaviour' system. Usually do it in weekly or bi-weekly slots, and the reward depends on the work put in.
•    Anonymous said… It's your home, your responsibility. Poor hygiene is common. Take control of your own home.
•    Anonymous said… My 17yr old Aspie is exactly the same but only started like this in the last 18mths! It's horrendous. He's just moved into the spare bedroom and we are going to get stuck into his bedroom and have a serious deep clean, shampoo carpets etc. You'd swear a tramp lived in that room 😖
•    Anonymous said… My boy is very similar . We have tried all sorts : nice shower gels , different toothbrushes , nagging , step by step explanations etc etcetc . Toothbrushing has got a bit better now the specialist dentist is involved . He seems to like his own smell ! And not a fan of washing but now heading to being a teenager I am having to insist but then we get lots of opposition , arguments and general stress . Not as simple as just taking control .
•    Anonymous said… My daughter (yet to get a full diagnosis) 10yrs will not brush teeth and when I manage to persuade her, 30 seconds is about the limit! She laughs at the state of her room, but will let me tidy as there's no chance she ever will! Tips on teeth brushing appreciated. Clean his room when he's out, that's what I usually do if he complains explain that that's how you expect it to be left and if he won't do it you will. Good luck.
•    Anonymous said… My daughter is seven and she is like the Tasmanian devil. Takes forever to pick up her room in no time for her to undo everything I did. I have to limit the number of toys that she can have at one time. If I didn't everything would be everywhere.
•    Anonymous said… My question is: Why so much Aspergers? What is causing it?
•    Anonymous said… My son did not start having hygiene issues until he was 13, but the thing that helped him was a chart. I made him a visual chart that showed him what needed to be done in the mornings. Also, I remind him daily regarding his hygiene (did you brush your teeth, etc.). He is 17 years old now--and is pretty good. (I also never allow food in his room, etc.) the only clothes on his floor are the clean ones he is supposed to be putting away (they overflow from the laundry basket sometimes).
•    Anonymous said… My son has the potential to be a hoarder so I try to engage him with relinquishing items. I let him make the decision but I don't let up. I say things like are you ready to give that to the kindy. I make him in control of the giving and if something of his is sold he gets the money. This has been an extreme challenge for him as he thinks his memories are tied to things and he thinks he will forget the memories if the thing is gone. Real hoarder ideology. You have to keep at it. I explain to my son that on our planet we are expected to live in clean conditions especially if we ave the means. I speak logic and it usually wins him over. ie: why shower today I did it yesterday I'm not dirty. It's the hidden germs they need to learn. I also taught my son about immunity he is 8 and got the concept straight away so germs and their constant barrage on the immune system really helped him understand the need for cleanliness. Tricky thing with our kids the need to be taught everything in a logical systematic way.
•    Anonymous said… My youngest used to throw the best tantrums if I even drove somewhere a different route. I told him tough luck we are going a different way. Same with the room...it IS getting cleaned, I'm the adult. I continually made my boys deal with change when little because wrapping them in cotton wool does them no service. I should know, I have 2 Aspie BIL's in their 40s who now can't function in society because their parents have died and they did everything for them. They never taught them self sufficiency. My boys on the other hand can now cope with change with minimal disruption to their day. I want my boys to be as independent as possible and if it means constant reinforcement of what is expected of them then that is what I have to do. Yes I am harder on them than their sister but the benefits are paying off.
•    Anonymous said… Oh my this is my life. My daughter is now 16 and I tried every intervention possible since she was 4 including therapeutic support staff, a behavior specialist, a case manager, a mobile therapist and several out patient therapists. Nothing seems to change. Ugh.
•    Anonymous said… Ok so he's 7. I would suggest some ABA or professional behavioral intervention. It's not likely that he wants to live this way but that he can't help himself. I know that sounds crazy but it's true. Aspergers and OCD come along with some very real manic and executive functioning behaviors. Don't try to deal with it on your own but don't act like he's an errant teenager. He's 7, help him. Interventions aren't just for him they are also for you so that you can understand what's going on in his head and body and so that you can learn to engage him in a way that will help him and get results that don't make you pull your hair out. And please don't punish him for something he can't help.
•    Anonymous said… Ok..He's 7. How are YOU not allowed in his room? My aspergers son is 15 knows I will enter his room and tell him what needs to be done whenever necessasary. Yes I have to remind him to pick up his dirty clothes. I have to remind him throw away trash. (no food allowed in bedrooms). I even have to remind him daily to bathe and use deodorant and brush his teeth with toothpaste. He has no access to any electronics until these things are done properly. You will always have to take charge and remind him. Don't let him control you or it will just get worse.
•    Anonymous said… Reward chore chart? Sitting with my son last night his 6 encouraging homework and confidence took about 20 stickers through out the hour of homework
•    Anonymous said… Routine, eat at the table put spoon etc in sink. Clean room before school everyday. Can take ALOT on your part
•    Anonymous said… Set the boundaries and cope with the tantrums. The tantrums will pass. Take away his wifi until it's done. He needs to be challenged to learn do deal with expectation even if he doesn't cope well at the time.
•    Anonymous said… Small steps. When your son is calm and in a state that you can reason with him, ask him conversationally what he thinks you guys should do about his dirty room. His answer might be insightful. If he refuses to engage in your conversation, choose something he really enjoys and tell him that if he helps you to tidy up then he can have it. Even if all he does is put a few clothes in a basket, he still deserves a treat because that is great progress. The shower/tooth brushing/ hygiene thing is often caused by the fact that the sensations are often more painful to an aspie. Did you ever have chicken pox and your mom stuck you in the bathtub? Similar thing here. Possibly try water play in a room temperature tub with bath colours to make it more enjoyable and when he brushes his teeth use a very mild flavour paste and a very soft brush
•    Anonymous said… Sometimes we need to find out why? Ask him if there is smells from rest of house that bother him. Try finding air freshener he likes and slowly clean up.
As for the dirt food and dishes. Give him 24 hours to take care of it or you can do it together. Let him understand this is not acceptable. Pick 1 battle at a time. Trying the we need to do it all may be too much for him to handle at once. Do it for him may not help or may... Try is is to put clothes in basket and you will pick it up on a certain day. My son needed a timeline and to learn appropriate patterns of behavior. Figure out steps and give him 2 choices....
•    Anonymous said… Spot on (from an aspie who couldn't keep my room clean... once it got past a certain point i just couldn't cow with cleaning it but got angry if anyone went in my room)... actually this is still me but less food rubbish
•    Anonymous said… This is a helpful FB page with information how to help your child out of defense mode. This group was started by two adults who have Aspergers themselves. They have some free information and also sell courses.
•    Anonymous said… this is familiar just not to this extreme... I am very stern with the tidying up the bedroom.
•    Anonymous said… This sounds like what we face in our home however, I tell my 13 yo Aspie son that he needs to take care of these areas of concern before he can get on the computer or play that video game he's been wanting to play. Make them earn what they want by having them address their hygiene. It's a win win and it's how the real world works.
•    Anonymous said… Withdrawal of wi fi works some if the time for us !
•    Anonymous said… You need to make it a rule that some things are acceptable in his room, other things are not. Like food. Enforce them- you'll get an improvement, after meltdowns, but don't expect a 100% . Recognise what you can tolerate and let it fall at that. Good luck.
•    Anonymous said… Your son is 7. While I understand the issues involved, you need to be the parent. 1) get him out of the house and clean it 2) set rules and stick to them 3) make it routine to do a clean out listing step by step instructions on how to do so 4) have consequences and rewards for adherence and non-adherence to the rules. Aspergers isn't a sufficient reason not to be the parent. My son has Aspergers and I refuse to let it be a gateway. I grew up spoilt because I had a disability and I played it. Then I grew up and reality was very different - it was harsh. Now I have a good work ethic etc but it took till my 30s.
•    Anonymous said… You're the parent…be one for his sake.
*   Anonymous said... This is how hoarding begins. I wonder if watching a few episodes of Hoarders with your son and a following discussion would begin to help him see what can happen if he continues with his current ways. He is also 7 and you have plenty of years to work together WITH him to establish rules for living in your home, such as "no food outside the kitchen and dining areas." We have two Aspie children and it's been a struggle to teach them basic hygiene. But even though they balk, they shower, brush their teeth, and use deodorant because those are not negotiable in our house. Maybe you and your son could make lists of what could be negotiable and non-negotiable, then pick and choose what battles to fight. That might give him a sense of control in his life. Our Aspies' rooms are always cluttered and messy, because that's their choice. But we don't allow food in rooms, and it's one of their chores to bring dirty clothes to the laundry room. If you need help establishing rules and boundaries with your son, please seek the help of a psychologist with Asperger's experience to work with both of you.
 
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