My eleven year old just been assessed as having Aspergers and Dyslexia with high IQ. Help!

[greengoose]

We paid for a private Ed Psych. to assess him, as he is quite clearly dyslexic, and we wanted that to be assessed before he started high school in September. The Ed Psych is a specialist in ASDs and has said he is very mild, but in her opinion definitely has AS. In lots of ways this fits, in others it doesn't.
He can think abstractly, use metaphor, get jokes, is very able physically, definitely empathises. (He has lost his sister and his gran in the last two years, so there has been lots for him to cope through). He doesn't really mind how his routine is, has no obsessive traits, and cares how he dresses etc..he is very physical, spends lots of time cuddled up with his brothers, or singing to the baby. The Ed Psych tested his working memory, and said it is good, so he is remembering what is asked, just not always wanting to do it! She also thought that might be more of the reason for his dyslexia, as he has the basics.
He is socially immature and doesn't hold onto friends, and has an increased/ distorted sense of fairness. He is a fussy eater. He struggles with letting others say their bit when talking and interrupts. He uses some odd words sometimes (rather instead of prefer, little things like that). He is difficult to get engaged if he doesn't like the subject at school. He thinks in the abstract and in images, is great at problem solving, and very creative at times (before Christmas he produced the best piece of creative writing his teacher has read from his age group, if you waded through the spelling). He is a loner at scouts, gym, swimming club, but he loves going, and is part of the group, just not having one to one friends. His speech can be too loud.

I don't know what I'm asking really! Will it get worse? Is it possible to just have a little bit of aspergers? Will he change/ become more distant? How can we help? What about the high IQ score, does that mean anything?Does changing diet make a difference? (He gets a sore stomach often, especially after eating). Should we tell him? He has (we all have) had such a horrible few years, I though this year would be starting to get a little easier, and then this. Hell. All and any advice very welcome.....

Hi

First off, an EP can't diagnose ASD. I can't imagine what measurements she used to suggest this. The comment about high IQ does not even suggest significant discrepancy between verbal and non-verbal skills that some EPs think typify AS.

Can you give us some more info?

Just written huge reply and lost it, now baby needing me, but briefly.... She spent day with him, in class, at break, then testing in afternoon. She was clear she is used to seeing and assessing kids on spectrum, and did say if we needed a formal assessment to go through gp, but she is known to schools, and they would work to her report.
She said ten years ago she might have missed it in him, that it was mild, but clearly present. She talked about his social immaturity and odd use of words, his difficulty with lists of tasks and his onesided conversations.

I'm not really doubting it, school were in no way surprised. I just don't know at what point things are so mild as to be 'just him' rather than him with aspergers. That's probably put very badly, it would still be just him, I know, but I don't know if he's severe enough to be classed as having AS, or if it's something you either have or don't, even if it's mild. I'm in such a muddle thinking about it, mainly I'm just scared for him, and how he will cope with high school, he's so excited, but it's going to be so hard if he isn't able to 'grow out' of some of his quirks, and get on better with groups. I thought he was just a little eccentric!

I would look now to getting your son properly assessed via the GP. Your son really does need to see a developmental paediatrician.

Re your comment:-
"She was clear she is used to seeing and assessing kids on spectrum, and did say if we needed a formal assessment to go through gp, but she is known to schools, and they would work to her report"

But again, EP cannot diagnose AS at all because this person is not qualified to do so. You need a formal assessment anyway. All EP can do here is make recommendations re additional educational needs. A verbal pronouncement that they would work to her report is frankly meaningless.

Has EP suggested you now apply for a Statement from the LEA, was that mentioned? (I doubt it).

How effective do you think his school has been with regards to dealing with his additional needs to date?.

Is your son on anything like School Action Plus currently, does he have an IEP?. Secondary school as well can be bloody hard for children who do not have or get their additional needs met so you need to act decisively and asap.

She said the school he is going to is best in area for working with kids on the spectrum, and that the now work to individual need not requiring statement. The school also said this to us at an open day. They will provide him with older peer mentor, and a ta to get him around school while he needs it, and in class if required, but she thought he wouldn't need this. they will also keep all his classes in the one area of the campus, and email us directly re homework etc. They have good ta support, and a dyslexia unit. This area and school is know for being a bit alternative, and it doesn't surprise me that they would do things like this in a less formal way... That's how we have found it so far and it's worked well.
The school he is at presently is a small alternative school, there are only 34 pupils. He hates to miss a day, and loves everything about it, they have been amazing with him, and he could not be more positive about himself or his abilities, but we do realise high school will be very different. He has been attending dyslexia tutoring every WE for two years, and should have caught up fully within the year, but will be allowed to use a tablet. The school are also giving him some extra welcome days, as well as newcomers weeks during the holiday. He is gifted in maths and creative writing according to his teacher, so we will have to push for him to be in the right sets...
He is very resilient, has enjoyed scout camps and sports camps, where he has just got on with things, slightly odd /awkward socially, but not too bad. I guess I am wondering if it will help him to have a formal diagnosis, if he needs it in his life, or if it would be negative for his view of who he is.

Hi Greengoose, writing to support what others have said. An EP cannot diagnose autism. They are not trained in any way to do so, so please do not pay a lot of attention to what you have been told.
There is no such thing as mild autism/Asperger syndrome. But...people can have a form of autism and also other disabilities/conditions alongside it. The combination of things is what makes life more or less tricky.
It's not a negative thing in outside society these days, generally. I'm autistic. So are my family. So are many of my friends and colleagues. None of us 'mildly'. Some are members of clergy. Some of us lead businesses and advise on autism. Some are artists, sculptors, authors, accountants, lawyers, surveyors...in fact any profession or trade or craft you can think of.
All have the same basic challenges - an inability to properly see body language/face expressions/eye contact messages. (People mistook this for us lacking empathy - but we just can't see if people are sad!). An extreme need to know what challenges are ahead each day, so routine or timetabling is vital. And most of us have sensory difficulties of some kind - our brains take in too much info from our senses and can't decode it all. So we get exhausted and overwhelmed in busy, noisy, chaotic places such as many schools. Many of us also struggle to understand figures of speech/metaphors without having to really think about what's meant. It makes social interaction very difficult, and we struggle to communicate socially. But our expert knowledge is often really fab.
So that's what autism is, basically. And generalising. And many schools are getting much better at knowing how to make easy adaptations to the school day/tasks to enable us to cope.
Does it get worse? Nope. Better? Nope. We're just different. Sometimes we'll cope better or worse for a while - but that's just life.
PS A sore tum needs looking at by a doc.

Hope that helps.

All sounds pretty good to me. The AS will either become more pronounced as he hits a busy environment with lots of change and thus his anxieties increase or, what will proablly happen if he makes a good chum who can guide him through, he will learn startegies to cope. He doesn't sound particularly vulnerable and I would just work on the talking too loudly thing so he doesn't stand out. The new school sounds great but he might find the jump from very small to much larger hard so be aware that round October time, once the novelty has worn off, he might find things a bit tough.

Just a quick thanks for replies, out to gym and scouts, but will read through properly this evening.

I would really appreciate any thoughts on whether to tell him, or not. (We would only do this if 'proper' diagnosis was given) He does tend to use the dyslexia label a bit negatively, although it's also good for him to be able to say why some things are difficult. He doesn't like to feel different from his friends though. It's a bit of a minefield isn't it?!

Sounds like my daughter who has Autistic Tendencies. So many different things together make a diagnosis particularly difficult. Some traits overlap so much its confusing. The paediatrician admits she cannot pinpoint a definate ASD diagnosis.
Sensory issues and social issues could be ASD or Dyspraxia or another type. I have accepted to a certain degree that i may never have a full diagnosis. As long as i have got her a good school ( independent special on her statement ) and she is happy there thats all I can ask. In her case an ASD diagnosis would have been worse as she would have been sent to a local mainstream as they had a ASD unit attached. She knows she has difficulties and her school are honest. If the IQ is high at least you can explain that he is learning differently but he is able if taught the correct way. He needs some reason so he doesnt believe he is unable to do things- he knows he is different/special by now.

He sounds rather like my ds, who has a very high iq and some social communication difficulties. I haven't pursued diagnosis for him because (unlike his brother) he isn't in conflict with his environment at all so I don't see how he would benefit from that diagnosis at present.

Can I knock on the head this idea of a spiky profile on iq testing being needed for a child to be autistic. That is NOT TRUE. End of story.

Also many eps are trained in recognising autism. It is true that we cannot diagnose as it is a medical diagnosis but many of us have had additional training and know what we are looking at. This board tends to dismiss ep opinion because we are unable to diagnose, but it doesn't mean we are therefore unable to recognise.

I do disagree with the idea of 'mild autism' though. Everyone on the spectrum will be affected differently. My friend's son has very impaired flexible thinking. This makes him very hard to manage, he has a statement and is in specialist school. However his social interaction skills are quite good. My asd son has only minor difficulties with flexible thinking interms of challenging behaviour, but he has massive social anxiety and very poor communication. Who is milder? Neither, they are just different.

Interesting point about dx ilikemy sleep. I thought that dx had to be multi-agency so the paed/psych wouldn't dx without the input of E.P, SALT, O.T....so E.P opinion very important.
My ds wasn't dxed when he was younger (although he has a dx now) because the SALT said no and the paed put a lot of weight on that opinion, even though he thought an ASD dx was a probability.

A good example ladyrainy of why ASD dxs should not be decided by committee but by a Paediatrician or Child Pyschologist/Pyschiatrist with specialist expertise in ASD.

Some of the other 'hangers-on' may not have had much ASD specific training so I would not want their opinions sullying any potential dx.

That Paed abrogated his professional responsibility by failing to assert his opinion and made an ASD dx. Very poor behaviour.

Yes I agree wetaugust. If my ds had been dxed when he was much younger by the paed (who actually told us that he was convinced ds was ASD) my ds's educational outcome would have been better - I'm convinced of that.

That can go both ways. I can recall several children who I sent for multiprof assessment b/c they seemed to me to be on the spectrum who were not diagnosed at the time, but were subsequently diagnosed some years later. The worst example being a 5 year old who to me was clearly aspergers who was not given a diagnosis and struggled on until he was finally re-referred in year 6 and finally recognised as being on the spectrum.

An EP who is also a Clinical Psych first can diagnose.

I suspect these are as rare as hen's teeth and they would be making the dx based on their Clinical Psychologist training and under that authority - not in their role of an EP.

Also Specialist SALTs and Nurses can Dx too!

I think you are wrong stating this.

www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/professionals-in-autism.aspx may be helpful

DS1's diagnosis was initially made by a specialist SALT using DISCO. She was also authorised to use ADOS.