first time here- 9 yr old AS son- behaviour AS normal?

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Hi everyone,

My 9 yr old, Gabriel, was diagnosed with Asperger's and Tourette's in February of this year. I was shocked as I was expecting a diagnosis of ADHD, but actually it explains all the 'odd' behaviour over the years, and has made me realise it was not all down to my parenting!

Some of the most troublesome behaviours for me are displayed only at school (he is an angel at home). He has had a few incidents where he has touched other boys' penises, pulled down his pants in the playground, and only yesterday he was being told off at recess for a small incident with another boy and whilst he was being told he was playing with his penis (he actually took it out of his shorts). I am sure this was a reaction to the stress of being told off, and that the former incidents were done to make the other children laugh, but I am scared he is setting himself up to be bullied. Heis only in 2nd grade right now, but I know it will get tougher as kids become more aware of his differences.

The other behaviour is a high-pitched wailing he does when he is nervous. You would think if you saw it that he was being silly, as he *is* silly a lot of the time, but I know he is this way when something is bothering him. He has been doing it a lot in class lately, and I can not find out what is triggering it. It is bothering the teacher though.

So, two questions. One, are these quite commonplace behaviours for Asperger's? And also, his first IEP is on Tuesday (and I am terrified and feel terribly unprepared!) Is there anything I can ask for to help with potential bullying, due to some of his anti-social behaviours? I am thinking of trying the mentor idea that many have mentioned here. Any other ideas of things to ask for? I have heard that California is a tough state to get help from.

One last thing, then I promise I'll stop Has anyone else experienced the wailing I am talking about? How do you deal with it? I want to tell him to shut up, as it is ear-piercing, though of course I wouldn't do that! But, although I know it is him acting out his nervousness, it is frustrating because I can not figure out what is triggering it, therefore don't know the best way to stop it. Grrrrr.

Thanks for listening, and I'm SO happy to have found this board! I am finding it hard to find any real-life support at this moment.

Lucy

The good thing about California is that we have city Regional Centers. You might want to look yours up and give them a call. They will want to do their own evaluation but you may get services and they are free. Both of my kids were diagnosed through our Regional Center and it sounds like your son would probably qualify for services.
As far as the penis thing goes sometimes kids masterbate as a way to calm their anxiety....or stimming! I did this and it was very upsetting and embarrassing to my Mother. I of course did not get diagnosed until about two years ago.
If he also has Tourette's the wailing my be a tic that he can not help. This would be a good thing to bring up to your doctors....but some kids with Autism also do verbal stimming and sometimes it can be annoying but it helps them feel better.
Sorry your having such a rough time and I hope you get some good therapy going soon for your son.

I've had quite a bit of experience working with Autistic children at various levels of functioning and honestly that's the sort of thing I saw with kids at a much lower level of function than is typically diagnosed as AS. Is he on any medications? Some times medication can cause odd behaviors. Re: the wailing is it possible that's more of a tic associated with the Tourette's syndrome rather than an autistic stim?

Hi Lucy, first let me say that I know exactly what you mean about having a son who's an angel at home and a devil at school! My son was very much that way last year in Grade 1, and eventually I came to understand that it all comes down to sensory issues. Simon had no control over sensory overload at school, he was inundated each and every day - and ridiculed and punished for how he handled it.

So the first and most important step is to get your son's school environment to be less stressful for his senses AND more tolerant of how he handles it - and an IEP should do that. I believe there is an excellent IEP permanent post here at the top of the Parent's Forum posts - go back to the forum list of posts and check for the IEP one. I think you'll find over time, that once accommodations are made for him (you may have to push hard for the right ones - and I do mean hard) that many of your son's anxieties lessen, and therefore his stims and inappropriate behaviours may also lessen.

Making a high pitched sound when nervous could very likely be a sensory reaction to stress. My son feels the need to scream or yell at incredible decibels when excited. It is one of the behaviours we've had to work on with him, because it's rather intollerable to those around him. The important thing is not to just teach him to "stop it", but rather how to "handle it". That may mean finding an alternative way to release his stress - likewise with the fondling. That seems sensory related too. Work on an alternative with him. Have you looked into fidget toys, which are very common for kids on the spectrum?

There's a post on my blog that I often refer to, which has a list of all the sensory related items we use both at home and in a travel pack: http://www.welcome-to-normal.com/2010/0 ... -away.html - there are some good fidget links in that post, including chewlery for oral seekers.

Since getting Simon's sensory issues under control and coming to really understand how he is neurologically different, he has been much calmer and happier. I would also strongly recommend the book Raising a Sensory Smart Child which was a godsend for us - it outlines a sensory diet (of activities, not food) that makes a HUGE difference for many kids on the spectrum. I'll be interviewing the author Nancy Peske on my blog in the coming weeks (and she'll be giving away a free copy of the book).

I would recommend finding some good aspergers or autism blogs to follow regularly. When my son was first diagnosed, blogs were a huge source of information and inspiration for me. Some of the best are www.life-with-aspergers.com (written by a husband and father who has Aspegers and also parents two boys on the spectrum), www.momnos.blogspot.com (print off her Hairdryer in a Toaster Brained World post and give it to your child's teachers to explain autism - SERIOUSLY, do this), www.hartleysboys.com - those all were really important to me when I was first faced with the diagnosis. Hartley's blog has a great sensory download tab which will give you a free form to print off and fill out with your child's needs for school, which would be a great appendix for an IEP. I also have an Aspergers pamphlet page on my blog that explains many of the typical Aspie behaviours and how to work with them.

Hope that helps to start you off

Welcome Lucy!

Ugh, the wailing. Um...yes that happens here sometimes...OK, a lot.

I've got two Aspies and a ???. All have ADHD, eldest has an assortment of other stuff. Little guy nobody knows how to label, but he's wonderful.

Middle son wailed all the way home from his day camp yesterday, argh. I hate when they do it all at once. They are wonderful kids, but I do have nerves, and they do get frayed. I've got some sensory issues of my own and the wailing is almost as bad as the argueing. That just irks me to no end. I have had some success negotiating with the children about it, but sometimes they just can't help it.

The odd touching isn't something we've had to deal with, knock wood. What did his Psychologist say about that? That's not some kind of physical manifestation of Tourette's or something is it? Does he mean to do it? What does he say? My boys would cut their own hands off before touching another man or boy's whatsit.

Middle son walks on tippy toes and holds his arms in a funny way. Eldest puts *everything* in his mouth and smears stuff on his clothes (I really wish I could find a way to make it stop). LIttle guy, well...he's just little guy. He didn't speak till he was five, and then went to a fifth grade reading level and speaking fluently in a few months, and is now in the 99.9percentile for writing and close to it in a bunch of other things.

I'm not sure what typical Aspie behavior would be. I'm even less sure what typical neuro-typical behavior would be.

Kiley

lilolme, I have heard about the regional centre- I haven't applied yet as I hear kids with ASperger's often don't qualify, but I am going to try at least, as soon as we have done the IEP meeting (I'm putting all my nervous energy into that right now!)

Redwulf, he isn't on any kind of medication. As for him being lower-functioning, in some ways he is, but he is also extremely bright. He does have a TON of sensory issues though, including toileting accidents, day and night (I swear he'll be in pull-ups for ever!), his noises, his need to touch a lot and BE touched etc. This does set him apart, of course.

Caitlin, wow, thanks so much for all that information! I wish I had found this website earlier now- the IEP is in less than a week, and I don't feel overly prepared. The school psychologist phoned today and said she definitely wanted to put him 'under the umbrella of special ed', meaning he will be able to use the resource room etc. this doesn't mean a lot to me right now. She said she wanted to make sure we were on the same page, but I don't know exactly what page that is! It is good at least that they are taking it seriously. I am still not sure though that public school is the right place for him. I will look into all the sensory stuff you mentioned though. We do have tons of fidgety toys, though they usually last about 5 minutes before he looses them! he is also addicted to blu-tack (not sure what they call it in the US! It is called blu-tack in the UK, where I come from...maybe in Canada too?), pipe cleaners and anything you can manipulate into shapes. This does calm him a lot.

Kiley, the touching stuff when he is touching others is partially a sensory thing, and also his way of trying to make the kids laugh. He has very poor impulse control. With himself, I think it is a soothing thing. He had no clue that he had even done it when I questioned him after the event.

Thanks for the replies everyone. I can't begin to tell you how helpful it is, if nothing else than to feel I am not alone. I am quite the opposite of an Aspie in many ways, so I have trouble understanding much of it.

Lucy

I wonder if the inappropriate touching is at least in part simply a lack of maturity. AS kids tend to have emotional maturity quite a few years behind their peers, and pretty much all toddler boys are obsessed with their male body part. Perhaps he mostly hasn't outgrown that? Or hasn't learned to control it and keep it private? That is a process most little boys go through, just not in first grade. So I would start by asking it be treated the same as if he were much younger. Teaching, mostly; not over-reaction.

My son is a sensory seeker in all manner of physical contact and it has been challenging trying to teach him that it just isn't appropriate, but he HAS learned over the years. It is hard for him, but he makes progress. One comment his OT made was that because of his loose joints he NEEDS more sensory input just to know where he is in air around him. With the loose joints, a high percentage of the nerve signals get lost and never make it to the brain. So kids with that co-morbid tend to touch and move and really seek. When you understand that, you can help the child better. You need to re-direct, not just stamp out. I don't know if your son has that co-morbid or, if he does, if it's been picked up on, but that is something to consider.

The high pitched wailing, possibly, the inappropriate touching, most definitely not.

Typically, when children touch other children in that manner, or themselves in that manner in public, it's a potential indication that the child was a victim of sexual abuse.

There is a chance it could also be a TS related tick, however it would be a very unusual one. I suggest you discuss this with a therapist.

I don't mean to alarm you but it is very worrisome behavior at his age, and the underlying reason needs to be found, and it needs to stop.

Yes and no. With my son, it has not been, but that certainly was my worry. He is just a sensory seeker when it comes to touch, and there is a lot of great sensation connection to some inappropriate places. Like I posted before, in a toddler that is considered normal. In a six year old ... not so much. But if that six year old has the emotional maturity of a 4 year old ... you're back at it maybe being normal curiosity. I think a parent has to accept the possibility it could mean more, and keep keen eyes open, but odds are it's just a developmental phase happening at the wrong time. Many moms have related being asked by their little ones to touch or play with certain body parts that we wouldn't dream of touching or playing with. The idea that certain parts are private and different from, for example, the fingers on your hand has to be taught.

There is still quite a bit of curiosity at age 6, thinking back - - but it tends to revolve more around the boy / girl differences than a boy discovering and showing off himself. Oh, man, am I remembering some embarrassing moments between my son, a friend of his, and my daughter ...

Point being, a good amount of inappropriate stuff IS normal, and panic would be inappropriate, but definitely keep the less innocent possibilities in the back of the mind and do some investigation.

DW_a_mom, he is 9, not 6.

Chronos, I am aware that this can be a sign of sexual abuse in children, but I also know that is not the case. He has not been around other people much- he is with me always, or his dad, who I do not suspect at all (and no, I'm not in denial). From what I have read, the touching of himself is not that unusual- it doesn't present itself the same way in all children, of course, but what he is doing is comforting himself- children masturbate because it feels good and because his social functioning is his weakest area, he is not aware that it is not an appropriate thing to do (though we have taught him with other children it is not appropriate, and he hasn't done that in a while- it was always done in jest- a quick tug on the penis because he thought it would make the other child laugh). He is an immature little boy with a long way to go, but I am always there looking out for him, and I would know if something were going on/had been going on.

and in reference to the last point in your post, DW_a_mom, I agree about keeping your mind open to less innocent possibilities. I was sexually abused as a child, not a great deal, but enough to make me hyper-vigilant of making sure it doesn't happen to my children (without becoming a mother hen). We have spoken a LOT about what to do if someone touched you in an inappropriate place etc. I am quite frank with them about such things (though, of course, keeping it at a level that they understand). They know the correct names for their genitalia, they know where babies come from etc. we are an open family for this very reason, to keep them safe and to give them the knowledge.