How fine is the line?

[raquelornot]

How fine is the line between having Aspergers and being a bit quirky?

 

I recently read Tony Attwood's guide but still don't quite understand. Is there a solid / measurable difference in the brain for example? Or is it all subjective and based on observed behaviours?

 

Last week hubby & I had a meeting with school SENCO & Ed Psych & they basically said our son's settled in fine to year one, despite his previous teacher having concerns about him. The SENCO told us about some finger skills sessions he does but aside from that they're happy that no further intervention is necessary.

At the end of the meeting the EP asked if we had any concerns ourself. My hubby said no, and I said the only thing that bothered me was why people (mostly playschool) had made some odd comments about him. She said it was probably in case he'd had Aspergers. I'm assuming that she doesn't think he does, or she would have said so. So they've put his "quirks" down to his personality. But it's a bit odd that there are so many similarities between his personality and AS. Also I'm wondering whether some funny things he does physically are acceptably NT for his age or not. How can I know for sure?

[Tally]

Asperger's is a syndrome, which means it is a collection of symptoms or traits. Most people probably have some of the traits - it's only when a person has enough to meet the diagnostic criteria that they would be diagnosed with Asperger's. Diagnosis is done by observing traits and assessing whether the person meets the diagnostic criteria. Sometimes it can be a little subjective whether a person meets the criteria.

 

Probably the most important part of the diagnostic criteria you need to consider is:

The disturbance must cause clinically significant impairment in social, occupational, or other important areas of functioning.

 

If your son's quirks are not really causing him any difficulties, then it's not Asperger Syndrome.

 

If he has traits that cause him significant difficulties, but does not meet the full criteria for Asperger's, he may get diagnosed with something like "autistic traits," which would acknowledge that he has significant difficulties.

[Sally44]

If he has an ASD [as Aspergers is going to be incorporated into the umbrella 'ASD' diagnosis in the future], then he will have significant lifelong difficulties [as well as some good or even advanced skills]. When I say 'significant' lifelong difficulties, these may include a literal interpretation of language [which can lead to lots of misunderstandings], he may have difficulties understanding gestures, body language, voice tone, and some have face recognition problems [again this leads to alot of misunderstandings, confusion etc]. He may have a specific learning difficulty [such as dyslexia].

The fact that he has "finger exercises" suggests he has some fine motor, motor co-ordination problems that may affect his writing. He may have dyspraxia. If he has dyspraxia it can affect cognitive abilities as well as motor and co-ordination ones. That would be a 'specific learning difficulty'. He may struggle to sequence, plan and organise himself or his work.

So now, if he has Aspergers and Dyspraxia, that is beginning to look more complex, and more likely he will have difficulties not just with speech and language and social communication, but also with academic tasks and physical abilities. So every area of funtioning maybe affected.

 

I know i'm generalising. And I am saying 'maybe' to alot of the above. But if he has Aspergers he must have speech and language and social communication difficulties [which will make communication and making friends hard for him]. And what are the "finger exercises" for?? What is his co-ordination like. Can he tie his shoelaces, can he ride a bike, can he wash his hair. Is he okay to have his nails cut.

 

Why are school saying everything is fine? Well they may be. But you have had concerns raised by others.

 

Unfortunately there is no great incentive to recognise difficulties because needs = support = money.

 

My own sons' school were saying everything was fine even right up to and after the point he began refusing schools, was vomitting in school, was self harming and threatening suicide and even when I found him on the window sill with the window open they said they had no concerns.

 

However there were great concerns. CAHMS said they were "astounded by the number of educational issues" "he was completely overloaded and overwhelmed on a daily basis" "he has no friends". He has now [after years of his anxiety not being recognised, supported or addressed] received a further diagnosis of an Anxiety Disorder.

 

What I would suggest is for you to ask for him to be assessed for Aspergers, or whether he is on the spectrum. Go to your GP and tell him that concerns have been raised, and that you want to be referred to the multi disciplinary team that has experience of diagnosing ASD.

 

I was just last night reading through some of the old school notes I had [i did a Data Protection Act search on my son so that the school and hospital and LA departments had to provide me with all their file notes - that was very interesting reading].

 

His first school had the SENCO observe him only 1 month after starting school. Then it took a further 5 months before he was placed on School Action Plus.

 

We recently went to an Educational Tribunal and won. He has now started an independent ASD only school for children with average cognitive ability. The Panel also Ordered that a Dyslexia teacher was bought in to go into his school for 3 hours a week. He has Speech therapy and occupational therapy every day. There is also an educational psychologist on site.

 

If your son is struggling in school it takes a long time to get anyone involved or for any support to be put in place. If he is self aware he may recognise that he is different and that he cannot do what other kids can and that could affect his self esteem and confidence.

 

I would also recommend that you get in touch with the national autistic society and ask them to be put on their register for the "Help" programmes. These are for parents of newly diagnosed children [but they have on-going seminars about all aspects of an ASD, which is very useful].

[Sally44]

If I were you I would be interested to find out about the finger skills sessions.

Has an occupational therapist assessed him? If not they should do. If school cannot refer I would again go to the GP and state that he is has fine motor problems and school are doing some finger skills sessions, but that you want to be referred to an occupational therapist for a full assessment as other areas maybe affected.

 

It may take you a long time before you get referred.

 

With my own son [who also has Dyspraxia]. The most we had from the OT was her showing me how to do some exercises at home. But by the time he came home from school he was in no fit state to do anything.

 

The OT also would not state "dyspraxia", until the CAHMS Psychiatrist put it in her letter and I told the OT that as my son has a Statement of special educational needs "EVERY" need has to be identified. I received a letter back stating he had dyspraxia. Now he gets OT for that, as well as a sensory integration programme for his sensory processing difficulties.

Edited November 27, 2011 by Sally44

[justine1]

Asperger's is a syndrome, which means it is a collection of symptoms or traits. Most people probably have some of the traits - it's only when a person has enough to meet the diagnostic criteria that they would be diagnosed with Asperger's. Diagnosis is done by observing traits and assessing whether the person meets the diagnostic criteria. Sometimes it can be a little subjective whether a person meets the criteria.

 

Probably the most important part of the diagnostic criteria you need to consider is:

 

 

If your son's quirks are not really causing him any difficulties, then it's not Asperger Syndrome.

 

If he has traits that cause him significant difficulties, but does not meet the full criteria for Asperger's, he may get diagnosed with something like "autistic traits," which would acknowledge that he has significant difficulties.

 

How does your son cope all round? Not just at school but at home and when you are out? Getting a diagnosis is about the behaviours being observed and making note of behaviours that have been displayed in the past,so if your son has some certain behaiours when did these start? They are making breakthroughs in ASD research and there is a scan,not avaiable yet,which does indeed show difference in brain activity.

 

You do not need the schools permission or confirmation,if you do strongly suspect ASD then go get a referral from your GP that way if he does have ASD and need additional support in the future at least you have it in black and white that he has got ASD.

 

I have had comments from a HV and two separate childminders that my 3 yr old may have ASD (two of his older brother have ASD diagnosis)but I am just not sure right now. He used to be very quiet,withdrawn and not really interact much,however whe he started nursey in Feb he started talking alot and is very bubbly. I am going to wait for him to start full time education and see from there, he has issues with food,is very active does not sit down much,has sleep problems and still in nappies. So the worries are there but I just want to wait and see.

[raquelornot]

Wow! Thank you for your replies.

 

Tally I guess as he doesn’t obviously have a “significant impairment” that would then rule out AS. He is generally well behaved at home and at school. He is very social and loves to chat to anyone and everyone, and seems to have plenty of friends.

 

Justine, he does cope ok in most situations and I don’t think there’s anything new that’s come to light. It’s only that I’ve been wondering about potential reasons why he was referred, and trying to view him more objectively.

 

Sally - his finger sessions are to help with his handwriting which is pretty rubbish. He has velcro shoes as most boys do. He can dress himself ok aside from the top button on his polo shirt and sometimes zips on coats / cardigans. We haven’t got him a bike as he wasn’t really interested in the scooter we got him. He doesn’t wash his own hair (though his little brother does). He has only started standing up to pee since he’s seen his little bro do it. Finger nail cutting is fine though toenails are always a battle of wits (as are haircuts). He wouldn’t drink out of an open cup until just before he started primary school. He struggles to open packets / bars – not sure how he does it at school. He has always been a bit anxious of doing physical things but over this summer he has got a bit more gutsy in terms of trying to get up climbing frames etc. He was petrified of the sea and wouldn’t go in it, although he did finally venture into a rock pool. The things he does physically which I’m wondering about is one of his arms goes around in full circles when he runs, or walks fast. Also at dinnertime he often flaps his hands around (which my stepdaughter finds v annoying!) Perhaps I'm trying to read something into nothing, but I think most people don't do these things.

 

In term of language he’s very expressive, brilliant at reading, and loves jokes and wordplay. He isn’t always sure when people aren’t being serious though, e.g. bonfire night as we were going to fireworks his dad told him they were over. He got a little upset and started asking if we had really missed them. I told him his dad was tricking him and he thought it was hilarious. But then his dad said the same thing a few minutes later and he believed him again.

 

Socially he's very happy but I don't know that he always reads the signs. Last week said another boy had thrown him on the ground at playschool. When I quizzed him about whether this boy was someone he normally played with he told me that usually he says “Energy biscuit, energy biscuit” and the boy says “Stop doing that”. When I asked why he didn’t stop he said that he “wants him to be his friend”. I’m wondering if the other bump notes he regularly gets are due to him annoying other kids. And on the way home recently he started doing funny faces to a young boy who obviously didn’t like it but I’m not sure if he noticed as I had to ask him to back off.

 

Anyway, we've had a little chat about a few things and hopefully he'll take it on board. I'll assume he is just quirky then as I don't want to be a hypochondriac.