Aspergers/PDD

Hello,

I was wondering if anyone here has any experiences with raising an aspergers child that they could share?  What is it like dealing with an issue such as this in the UK?  My son who is almost 5 has been displaying some unusual behavior.  I have always known he was different but could never put my finger on what was wrong.  His reception teacher has been concerned about his problems socializing with other kids, lack of eye contact amongst other things and had him reviewed by the senco.  They are going to keep him in mainstream class and have been helping him with speech therapy and additional special ed. 

My GP saw him and referred him to a pediatrician and they seem to be querying aspergers or PDD.  I'm completely distraught and have been awake all night worrying about my poor little guy and how he is going to get on in school and make friends.  I know he wants friends but cannot seem to relate with the other kids at all.  The only thing he ever talks about is his super mario game.  He can't tell me what he did at school but he can talk about his game till the cows come home. I'm am terrified he is going to get bullied down the road.  So it's like 4am and here on the computer I sit worrying and fretting and unable to sleep.

If anyone can give me any info about raising an child with Asperger's and their experiences with UK schools I would greatly appreciate it.

Hugs, Nicole.  What a lot to worry about.  Has he seen a child psychologist yet or the educational psychologist?  Maybe you need to get a firm diagnosis. 
There's a book I'd reccomend, it goes through different things like Asbergers, ADHD, Autism, etc and tells you the things to look out for and what to expect.



I'd also try to find a support group in your area-or failing that find one on-line.  It does help to talk to people who've been through the same thing and may have some good advise.

Sending good thoughts.

I have a friend who is an Asperger's specialist and works at a local school as a teacher's aide. Have you called different schools to see if there's anyone on staff who knows about it and could help your son?

Hugs, Nicole. I'm sure you must be going through quite a lot.... There are good programmes in place to help your little guy over here, but I'm afraid the squeaky wheel scenario is all too common - you really do need to get your own independent diagnosis and then INSIST that your son gets what he needs. Mindy's definitely right - get him to a child psychologist or, if that's not an option, the school psychologist, and have him formally assessed. I'm nearly finished with an MSc in child psych. and I can't stress getting a proper diagnosis enough. What you've described are a few of the text-book signs of autism (though it's quite a lengthy list of symptoms that must be present to get that diagnosis), but the fact that he clearly wants to be social but can't does suggest Asperger's. BUT there are quite a few of what they call "Pervasive Developmental Disorders" that include Asperger's but are all slightly different and call for different plans of action - that's why it's important to get him assessed by a psychologist.... What's his speech like, out of curiosity?

Good luck. Oh, and there are a few mothers here who have children with these sorts of difficulties, so no doubt you'll get a lot of support here!!!

Edited to say: oops, just noticed the title of this thread is Aspergers/PDD - so obviously you've done your homework and already know about PDD. Sorry for going on with too much information!! 

Thanks for all the info guys.  Anne, you asked about his speech.  I have to say it is a bit odd.  It is very flat and monotone at times. He is talkative about the things he is interested in (back to the super mario game) but if I ask him questions such as "how was school" or what did you do today" he can't always tell me very much.  If I say to him "you are a very clever boy" he says "I not called clever I called Noah" and he gives me a puzzled look.  He is doing well with his math and reading skills at school but teacher said his behavior is often very innappropriate and it interferes with his work.  He will go and sit under the table when it's story time and refuse to come out.  At recess he likes to wonder about and chat to himself but won't join in with other kids.

Anyway thanks again for your responses everyone.

If you would like to discuss it in private, I'd be happy to talk to you and share my experiances.  I have a 15 year old son with a form of Asbergers/Pdd/Autism (offical diagnosis "A-Typical Autistic Spectrum Disorder" - hows that for a long ass phrase that means nothing? ). Out of respect for his privacy I would prefer not to post about his struggles and triumps on a message board, but would be happy to talk one on one.

You can send me a PM here or email me at rosie@darkrose.co.uk

I totally understand being distraught, but let me assure you you don't need to be. There are much worse things that could happen in your life. In fact, this isn't necessarily a "bad" thing at all.  Really. *hugs*

Rosie

Nicole, sorry for your troubles with your son. My godson, who is now 13, has Asperger's. Raising him has been a challenge for his parents. But, he is a marvelously intelligent young boy and his gifts are apparant to those that know him well. I will contact his mother today and ask for permission to give you her email address. I know that she is linked with many other parents of Aspies from all over and also belongs to several online discussion and suppport groups.  

Having specialized in developmental disabilities, especially autism spectrum disorders, for the past five years, I can whole-heartedly support AnneR's recommendation to push for a definitive diagnosis. PDD is a sort of catch-all diagnosis that is primarily used to indicate developmental disorder when professionals aren't sure which one. It is beneficial only to qualify a child for special assistance but does nothing to ensure that the child's specialized needs are met. Children with Asperger's have a very specialized set of needs that are not the same as a child with Autism or Mental Retardation. Researching and understanding the differences between Autism and Asperger's will help you to be able to identify behaviors indicative to one or the other. Here is a link to a site that will give you some basic information. With your permission, I'll PM you later today with my friend's email address.

http://http://users.wpi.edu/~trek/aspergers.html

You and your family will be in my thoughts,
PaulaH

Hi, again. I asked about speech because it's often a key factor in diagnosis. Delayed language, or if there IS language, difficulty in starting/maintaining conversations, repetitive use (called echolalia - repeating the same words over and over, etc.) and difficulties with make-believe and socially imitative play (playing doctor, house, that sort of thing) are all symptoms in autism, but Paula is so right about children with Asperger's needing very different support....

Do have him seen. And please keep coming here for support - it's a good group and as you're seeing, there's quite a lot of experience to draw on!!!

Nicole, *hugs*. My son is five now, and we got him evaluated at 3 because of speech delays and other things that made me concerned. the result was just that it was too early to tell. I still think there might be something there, I dunno. Just wanted to send good vibes and hugs.

Nicole, *hugs*. My son is five now, and we got him evaluated at 3 because of speech delays and other things that made me concerned. the result was just that it was too early to tell. I still think there might be something there, I dunno. Just wanted to send good vibes and hugs.

Leah, my best friend tried for years to convince her son's doctors that something was wrong. They ran numerous tests several times a year and diagnosed him with everything under the sun...each diagnosis proving to be not quite the right one. He was eight before they "settled" on Asperger's. I believe that parents know their child best and if they are convinced something is off, they're right. Just keep at them and I'll be praying for you and family.

One of my godsons was diagnosed with Asperger's this year.  He has struggled in 1st grade, especially with friendships.  Socially, he's on par with his 4 year old brother and he'll be 7 tomorrow.  He was diagnosed by a pediatric nuerologist after an initial referral from the pediatrician.  He currently takes Zoloft which seems to help, in addition to the support he gets at school.  Routine is very important, as is maintaining a good behaviour plan. 

Good luck and push for the diagnosis and then push for his statement at school.  Another friend of mine here has a daughter with autism and a son with Asperger's.  Their schools have been supportive. 

One thing to also keep in mind is that people with Asperger's are often incredibly successful! Where they might have to really work at their social relationships, they often get along really well in fields that call for strong focus and individual (as opposed to group/team) work. There are some who feel Bill Gates may have undiagnosed Asperger's - he apparently really has to force himself to be social and has a lot of mild Asperger's traits. There was a controversial article that appeared in Wired magazine that conjectured that the recent-ish surge in the Silicon Valley of children with Aspberger's may have been partly due to computer programmers with undiagnosed Aspberger's meeting each other and having babies - the relief to be with someone who has the same challenges as they have themselves maybe leading in part to their relationships and then the subsequent passing on of the genetic code.... All theory and very controversial, but very interesting!

Also, Einstein had Asperger's, as well as Isaac Assimov, Alfred Hitchcock, James Taylor, Neil Young and many more.

Nicole
Hope you found the forum I PM'd you to be useful.  I've met some good people from there who've been most helpful.  Our daughter, age 2 years, is still being evaluated, as she's experienced delays across the board from about 8 months - when it was found she could not sit up on her own. 

It's been a struggle for some mums I know, but a diagnosis is SO key!  Our daughter was tested w/CHAT to rule out autism.  As her delays are across the board - gross motor, fine motor, speech - she is being queried for Global Developmental Delay (GDD), rather than 'on the spectrum' of autism. 

Make sure any other genetic/chromosomal abnormalities are ruled out! 

If you can afford it, it might be helpful for him to see a developmental paediatrician - at least, this is what a lot of the ASD and Asperger's mums have tried during the diagnosis process. 

You're not alone, hon! 

Hi,  Nicole.

My nephew, who is now 35, has Asperger's Syndrome.  He is a math genius and did well in his studies once he realized how important getting good grades would be.  He is happily married and working.

If I could use only one word to describe him, it would be concrete.  Right and wrong are the biggest concepts in his life, and I mean right and wrong in the broadest sense, moral, temporal, physical, etc.  There are no shades of gray in his life.  That's why he was drawn to math--it's right or it's wrong.  He understands the concept of funny, but it can take him years to "get" a joke.  Routine is important because it comes under "the right time" to do things, "the right route" to walk to school. 

It was tough for him growing up with 2 brothers who are clowns.  They did tease him a lot, but he learned how to deal with his differences.  School was fine but boring.  He needed to be challenged more than the rest of his class, so he was allowed to do special projects so he wouldn't race ahead.  He's still trying to find his professional niche, but he enjoys working.  His life is good.

All this to say that if your son has Asperger's, his life can still be full of love and fulfillment.  Hugs,
Chris