Aspies For Freedom

My eldest son has just turned 7, we live in the UK & last year he was diagnosed with ADHD.  We were lucky that he had a great, switched on teacher at the time who knew exactly what to say to the doctor to make him do an urgent referal so he was assessed within 2 months of asking.  He was diagnosed as pretty mild ( doesn't need medication, we manage with diet, structure & strategies)

The thing is, ADHD alone just doesn't cover it with him.  Looking through the online tests & reading all your posts, so many of them could have been written by him.  He has problems with social interaction, to the extent that kids rarely come to call for him, he never gets invited to parties, he's known as "that weird kid" in the playground which makes him an easy target for bullies.  Because he doesn't understand how to react, or why it's happening, he tends to lash out.  When he does he goes into such a rage he doesn't seem concious of his actions & afterwards looks dazed & is unsure how the other child got hurt.

He gets obssessed with certain things, most recently it was Yu-Gi-Oh cards, he'd spend hours pouring over them, catorgorising them, catorgorising them, ordering them to be more efficient in a duel, learning what every available card was (there are literally hundreds) & memorizing what each one looked like.  Before that it was geology.  He has a collection of notable stone & rock specimens, posters & print outs of the processes that lead to each one forming, maps with areas most likely to find volcanic rock noted (that was his main section of interest) & research into the effects of climate change as evidenced through the changes to these rocks.

When he gets into one of his obssessions they are all consuming, he devours anything even vaguely related to his new pet subject & utterly excludes other information, such as schoolwork, in favour of more time researching.  They seem to burn hard & fast, so that his obssessions change every few months, but without ever quite dropping them entirely.  He still picks up interestingly formed stones but isn't as fanatical as he used to be.

He also has difficulties in understanding non-verbal & even verbal cues, he misunderstands eye contact as aggression & when meeting new people he introduces himself by launching into a monologue about his current interest, even if it is patently clear to others that the person listening isn't interested, he doesn't appear to notice.

At home it isn't too much of an issue, as I'm pretty much the same, although I've learnt to restrain myself about my obssessions, but it's socially he has problems, at school or out to play.

Now for my problem, from what I've seen of him & read on here, other sites & library books it does sound as if he's an aspie. But.. I've also seen the different way he was treated at school after his diagnosis as ADHD.  Both by teachers & pupils. A couple were great, very helpful & understanding, learnt some of his cues & were able to head him off into more productive areas, but the majority looked on him as some kind of freak.  He hasn't been special needs statemented as educationally he isn't behind, he excels in science, maths, history & IT & is at expected levels for literacy.  His poor co-ordination & tendancy to daze means he's failing PE, but he does tae kwon do perfectly fine, as it interests him.  Walking along a balance beam while catching a bean bag doesn't.

Given what I've learnt today about having to declare Asperger's to the DVLA as a 'disability' (a wrongly applied term, if ever I heard one) I have to say I'm having serious reservations about getting an official diagnosis.

Would it benefit him enough to warrant the intrusion into his life & the stigma of being labelled that would have him seeked out by every bulying chav from here to eternity? Would he actually get anything from a diagnosis other than a sense of "ok so that's officially what it is"?  Would I be able to access help & support groups without one?

Would it be deceitful for him to go through life knowing he was probably an aspie, but to all intents & purposes 'hiding' it?  How much would it damage him to think he has a difference which must be hidden?

I'm sorry if this is very rambling & TMI.  It's just been great to find a site where we wont get labelled & I guess it kinda all came flooding out. :oops:

I am not getting the impression from your post that further diagnosis at this point would get you far, but that is only an impression, and we can explore some of the factors I think go into it.

First, I'll let you know that my son was given a TENTATIVE diagnosis of Aspergers at the age of 7, by the school psychologist here in California.  That was enough to get him all the accomodations and services from the school we think he needs, plus some.  Our school special education team, I believe, has a top of the line understanding of spectrum issues, and I couldn't be more pleased.  Not pursuing it further I do feel gives me options.  We have enough information for our family to understand our son, enough for my son to understand why he is different, and enough to get my son school services.  We have not, however, permanently done anything in his medical records so, should the negatives someday outweigh the benefits, the term is something we could fairly easily have displaced.

I am getting the impression that Asperger's is often missdiagnosed as ADD, and that creates many potential problems.  First, is the medication issue.  I can't see how medication would ever help my son, since he focuses just fine when he's interested.  Second, is in accomodations.  While many are similar, not all of them are.  My son, for example, is allowed to substitute typing for any assignment, is allowed to participate in a modified way in PE, and is allowed to ask for test questions to read to him as clarification.  The environmental accomodations, however, are probably similar, in that it sounds like your son's sensory issues are being well addressed, which is good.

Some of the services my son gets as a result of his Asperger's diagnosis include pull out sessions for extra help at school (mostly with writing and spelling), speech therapy (for what are known as pragmatic speech issues - the ability to use speech appropriately to acheive the desired function - this would probably be a great therapy for your son), occupational therapy (both fine and gross motor skill issues), and lunch bunches (supervised board game play during lunch, with help and suggestions on accomplishing proper social interaction - another item that would probably be of huge benefit to your son).

I guess my main concern as I read your post was that I really wasn't sure your community and school would understand your child any better if they knew it was Aspergers.  If they understood Aspergers, I would have thought they would have already suggested it.  I never in my life dreamed that my son's road blocks were from something on the autistic spectrum, and I was quite taken aback the first time it was suggested.  But the more I've learned the more I am sure they are right.  And, parenting my son on the assumption that it is Aspergers has made our lives much, much easier.  But, again, this information was given to me because I am surrounded by people who seem to really understand spectrum issues, and are very supportive of children with them.

Perhaps you can start by finding out what your school offers to a child on the spectrum.  What would they recommend for him?  Do they have experience?  What is their perception of autism and related conditions?  If those answers aren't coming back positive, you won't have much to gain with a diagnosis unless you change schools.

I'll come back later and see if I have more thoughts ... I do think you are right on that it is really Aspergers.  All in all, to my opinion, a far more positive condition than ADD.  Aspergers comes with many gifts.  They just need to be understood.

PS - I'm not concerned about "hiding it."  I don't think any of us are obligated to explain to the world all the things that make our own brains unique, and that is what Asperger's really is:  a name for the way a brain is wired.  You wouldn't think you'd have to share with people if you are bad at spelling, not always organized, like to dreamdream?  It's your choice, isn't it, how much you will let others into your private world?  That's how I see the choice on telling others about something like Aspergers.  The term is useful when it gives you something you need, like school services.  But, when it comes to living life ... it's a private choice.

He has a lot to gain from getting a dx in the UK at his age.
As he gets older school could become very difficult, problems with bullying, concentration, or teachers with an attitude.
If he had a statement of education for the aspergers too, it could really help.

He could also get more help in further education, which can make a huge difference.

I read through my own post and started to realize I was stating more "for" diagnosis than "against."  Too funny.

I think this is a very individual matter.  We have one member here who found the process very traumatic and invasive of her privacy, and still is very angry that her parents put her through that.  If that might be your son, be very sure that are strong benefits before making the choice to diagnose.  Do you think your son is mature and self-aware enough to discuss this with?

Your son is almost without a doubt an Aspie.  I think there is a lot to be gained from a diagnosis - for a start you can tell him something to the effect that he is very special and different - that his brain works differently from most people and then get him help from the appropriate places to manage social situations, etc.  I have heard that the more help, support and understanding Aspie kids get when they are young, the better they fare.  

My partner is one and before diagnosis (at nearly 30) it wreaked havoc in his close relationships, though he didn't fare too badly in childhood as he is very mildly afflicted in some areas.  

Good luck!

Thanks for your replies  :smile:

As far as his education being helped by getting a dx is concerened, I don't think it would tbh.  I'm currently appealing the head's decision to move him out of the class of the only teacher in the school with experience of working with ADHD ( he is the only child in the school with a dx as being ADHD, it's not bleedin rocket science that he should be in her class surely?  :roll: ) as she wont consider doing anything to help a child she has labelled 'disruptive, backwards & unworthy of time' so I seriously doubt adding in "Oh btw he also/instead has Aspergers" would frankly help much, or do anything other than give her more reason to try & segregate him from his peers. I also don't want to get him Statemented as school sround here are unwilling to let it drop once a child has got a statement, as they get extra funding for that child & I don't want him labelled as 'that special needs kid' the whole way through schol, even if he doesn't need extra help anymore, just because the school wants extra money.

I'm not in a position to move schools or catchment areas either.

With reference to helping him understand his brain is wired a little differently, I don't see why I need a dx to do that.  He knows he reacts a little differently due to the ADHD & was told & accepted that before there was any official DX, so I figure I can just do that again.

I'm answering my own question here, with my reactions to points made aren't I?   Thank you for your answers, I'm going with not dx-ing atm, but will bear in mind Amy's points about further education if & when any problems in school crop up as he gets older.

Thanks again all  :smile:

Go with your good motherly judgement - you sound like you are on to it - mothers usually know best what their child needs and if it changes and you need to take action, I am sure you will just know.  Good luck.

I have just been to the psychiatrist this morning. (my time is +1 GMT)

He said that i am not autistic at all, and not even Asperger's. Yet i noticed his - perhaps - old-fashioned way of fusing Autism and AS as if these two conditions were simply two labels for a common condition.

He said that i can express myself properly and without "bizarre" movements, and that I do talk (perhaps "too much"), and i do not live in a world of my own. But i tried to tell him that there is a dichotomy between Low-Functioning and High-Functioning, and that High-Funcitoning Autistics, thus Aspies, do talk (even at length) and are not secluded in a world of their own.

Well, the visit ended with him repeating stressfully: "You are not autistic". Yet my last word was that Asperger's is not exactly Autism.

I will be visiting him again in four weeks time. Does anyone of you know how i should present Asperger's to him?
He is a very professional psychiatrist yet a bit of "old-school" minded.