Finally pushing to see an ED Psych

[moid]

Hi,

DS1 is 9, after years of rubbish and lack of help from school I am finally pushing to see an ED Psych through the school. Couple of incidents and I have pushed to have a meeting to talk about this.

Started to prepare a list of all his strange behaviours - one or two looks quirky but stacks of them look like Aspergers. He is pretty high functioning and does appear to know when he is doing wrong, checking to see that I am looking for instance. So I can understand why they think that I am one of those "middle class" mums who blame their bad parenting on a special need

Two questions:

1. What should I ask the school? What will they ask me?

1. Could he have Aspergers when he definitely is not totally social dsyfunctional?

Many thanks

An alternative to asking at school is to also ask your GP doctor to see whether he can make a referral for diagnosis.

One of the questions they ask when attempting to diagnose Aspergers is: "does he or she like climbing trees and climbing on garden walls"

Well that would be No. Although he has done some climbing on a wall through school - not that he loved it but nor did he hate it I think.

Someone else mentioned GP. Think I will see if we can get any movement from the school next week first.

Does he focus all his energy on his favourite hobby?

Have you looked at the NAS ( National Autistic Society ) web site? Or you can phone up NAS and ask them to send you a diagnosis pack in the post. You may be able to do a self diagnosis questionaire with him at home, then you can take that to your GP and ask for a referral to an NHS assessment unit.

Yes in that he is obsessive about computer games, though he can be persuaded to come outside and play football with his dad occasionally.

I'll check out the NAS.

I know a couple of Aspergers kids and he is and he isn't if you see what I mean. But so many of the symptoms describe DS1.

Moid - make sure you ask the EP to check for ASD. Otherwise they might not notice it. They will be looking for all sorts of things, not just being totally socially dysfunctional.

An EP is not qualified to dx ASD - but would be part of the diagnostic process.

We got diagnosed by a paed who asked the EP to assess him.

EP reports are very variable. I think you need to go to your GP and ask to be referred to a paed.

There is more knowledge about Aspergers these days. In the past many people have never been diagnosed. High achieving Aspergers people can be very successful in their specialist field. In my opinion many of the people who worked at Bletchley Park on Codebreaking during WW2 had Aspergers. An Aspergers persons mind works like a computer so accordingly they can find work as computer programmers for example.

Do you think he thinks like a computer? EG step by step and very methodical?

He likes to read computer game manuals and warhammer manuals - more interested in the gaming instructions than the fantasy descriptions ie: roll 5+ for wardsave ..(whatever that means)

Also rather good at chess

Thanks - think we should go to the GP. Will speak to the school and see what they think then assess our next move next week.

I am quite aspie myself to be honest.

Me too.

I recently found myself on a school trip stuck for an hour on the coach - getting more and more stressed by the noise and lack of order. Head stuck in book!!

My DS who is only 5, has a dx of autism (HF). He has delays with language, sensory differences, ...ect; but when it comes to social problems he isn't what i'd call 'totally social dysfonctional' .

In a nutshell, he has diffculties understanding what is socialy appropriate, how to join in/participate in games, group activities, he can be either too distant and has trouble relating to peers or he is too much in their faces iyswim.
He has difficulties finding and understanding the middle ground when it comes to social behaviour. It doesn't seem to come naturally for him like it does other kids.

Indigobell is right. Watch out , 'coz many EP are not asd trained and will not nessecary pick up on Aspergers.

One of the things which I have heard about some Aspergers people is that if they are telling a story, and someone interrupts them, then they cannot take the story up at the point were they were interrupted, but have to start again at the beginning. That is like records on Magnetic tape in a computer system. serial access memory. But may not apply to everybody.

genie, that has prompted my memory. Some aspergers people find it difficult knowing when to reply to a conversation. they end up just interrupting, they seem not to be able to spot the gap in the conversation, and butt in at the wrong moment.

Hello Moid

This would be a good starting point for you to find out a bit more about Aspergers. There are also some really good books on the subject here. I read Tony Attwood's Complete Guide to Asperger Syndrome as a starting point when we were first considering having ds assessed.

Every child with Aspergers is an individual and will have different strengths, weaknesses and difficulties just like any other child. It is just not possible to make a statement that says "all people with Aspergers do X" or "all people with Aspergers are good at X" or "people with Apergers can't do X".

To get a diagnosis of Aspergers, individuals have to have problems in three areas. These are commonly known as the 'Triad of Impairments' and are Social Communication, Social Interaction and Social Imagination. There's more information about the Triad on the first link above.

Not all children with Aspergers will grow up to be computer programmers, not all children with Aspergers are super brainy or have savaunt skills. They are all individuals and despite the fact that we often find similarities amongst our dc's, they have as many differences as they do similarities. It would be fair to say that there are lots of children with Aspergers whose 'special interest' is computers - then again that is probably about the best/only way my ds (8) fits in with his peers, as all the nt (neuro-typical) boys in his year are also obsessed with computer games etc.

My ds does happen to love computers (particularly games) but is anything but logical or methodical, in fact he is probably one of the most chaotic and disordered people I know. Not at all 'step by step and methodical'.

I would have a chat with your GP and/or the school SENCO (Special Educational Needs Coordinator) if they seem approachable/helpful and do a bit of reading around the subject to help you decide whether or not you feel you want your ds to be assessed.

You can borrow tony attwood and other books for free via Cerebra lending library join on their website

a little off track ish.. But ...climbing trees?..( with regard to AS
Have never been asked that.. What a strange question ..

I was just about to ask the same question TACC... on Guide camp last year DD3[6] climbed to the top of the climbing tree with out any problems, [no fear of danger], She cant climb a wall though, or a gate, she doesn't know which leg to put over at the top and gets very confused!!

Tony Attwoods book is very good, you can dip in and out of it when something crops up.

When I was mum of PFB in SW London I remember taking him to one of those baby gym classes where they had to climb up a ladder, put one leg over and then climb down backwards. Not a clue, no idea if he can do it now - I am going to find a gate to check

More questions than answers, the problem is that google has too much information and you find yourself going round in circles - he is, he isn't, he is - and by the end of it you are no clearer

I AM GOING TO FOLLOW THIS THROUGH THIS TIME (shouting at myself)

Oh been there, done that. I never learn and still give myself google overload on a regular basis.

Honestly though, the Tony Attwood book is very readable and for me, answered a lot of my questions, as well as enabling me to ask the right questions when we eventually started to see the relevant professionals.

That said, the NAS website is also worth a look, its not exactly googling, so doesn't count.

My ds has had a verbal diagnosis from the paediatrician and is awaiting multi-disciplinary assessment. I have done stacks of research, asked hundreds of questions and know in my heart that he is has AS, yet I still have moments when I find myself thinking "is he/isn't he?". I think its totally normal and all part of the process really. We want to get them all the help and support they need, but at the same time don't really want to accept that they have a concrete diagnosable problem iyswim.

You'll do fine though. You found this place (which is the best possible place to find all the help, support and advice you need) so you've already started to earn your stripes.

This is an example of DS1

Went into school to do group reading, DS1 expected me to take his group, teacher decided that the mums did not take our children's groups. DS1 is obviously disappointed and angry with his teacher (his words). They start to read, DS1 is skipping on because the book was too easy for him, the mum asks him to follow the book. And DS1 is incredibly rude, not just gently rude, very very rude.

Totally out of proportion to the crime and this comes out of the blue when most of the time he works hard in class.

Told this and another example to my friend who is a teacher and she said he isn't coping, is it AS

Certainly my Aspie son would be very upset if an unexpected person took his reading group - and the Adult trying to take him would be well aware how upset he was :)

Moid, I had exactly the same thing with ds1 when I used to help out in his class with guided reading and literacy. He always wanted me to help his group, but it wasn't school policy for mums to help their own childrens' groups. Also, the whole time I was there he would be either looking at me or trying to speak to me and if I had to miss a week for any reason he was devastated.

In the end I had to stop going in to help as it was too disruptive. That was three years ago and he still hasn't forgiven me for leaving.

He also comes across as very rude when things don't go his way. Er, forthright would be an major understatement. He definitely makes his feelings known and has an extensive vocabulary to help him! Fortunately, his vocabulary doesn't extend to rude words - yet!

Its true that being that direct and coming across as rude can be an AS trait, but that doesn't mean that because a child does it he has AS.

Perhaps it would help for you to write a list of all the behaviours you have concerns about and then see if they seem to tie in with the stuff on the NAS site and in the books.

Alternatively, if your GP is approachable, you could just book an appointment and ask whether or not they feel there is cause for concern. Dh and I booked an appointment without ds the first time, so that we could discuss our concerns freely. On the recommendation of someone on here (sorry I've forgotten who) we took along a sort of background/briefing document about ds and our concerns about him and the GP forwarded this to the Paediatrician when she referred us. The Paed said it was really useful to have the background information before the first appointment.

We have since updated the briefing document regularly and make sure that every professional involved with ds has a copy at referral or the start of their involvement. Everyone has said how useful it is and I feel it has helped speed things along a bit for us/ds.

He was rude to his teacher recently and I quote:

"No child has ever been that rude to me, in fact no adult has ever been that rude to me"

And, all she was asking him to do was to get changed after PE, for a convoluted reason he did not expect to have get changed.

I have started a list of all his odd behaviours, I have edited so as not to totally reveal my identity

Language

1. Literal understanding of language
2. Repetition of words and phrases
3. Always been an excessive talker
4. Talks without requiring any reciprocation even when stopped and this is explained to him
5. Babyish voice
6. Can be prone to constant teasing other children
7. Very quick to take offence
8. Doesn?t like some words, recently called him ?eldest son? ? didn?t like this accused me of insulting him. Even when I explained the meaning upset with the word.

Physical

1. Invades other peoples space ? gets very close
2. Likes to touch other people especially faces / squeezing cheeks
3. Silly facial expressions
4. Strange gutteral sounds in other children?s faces (ie: his brother)
5. Violence especially towards other children

Sensory

1. Doesn?t like buttons or zips does not wear them (except school uniform as he has no choice)
2. No writing on clothing
3. Clothes can be rejected for an uncomfortable seam etc?
4. Doesn?t like some loud noises
5. Doesn?t like ?stampedes? at school (his words not mine)
6. Visually sensitive, Recently refused chocolate because in the shape of a vampire.

Other

1. Doesn?t like change, needs lots of warning of changes in routine
2. Always looking to impose a pattern ie: we read on Monday, Thursday and Sunday
3. Stimming / Flapping ? comes and goes but has done both in the past. Not particularly noticeable at the moment
4. Not knowing when to stop.
5. Difficulty with social interaction especially his peer group and large groups. Much better with adults and younger children.
6. Obsession with computer games and role playing games.

I know you cannot make a diagnosis but am feeling rather alone with all this and just want to offload really.

But he is lovely, funny, likes to work hard in school

Its ok, I understand how alone you are feeling with it all. It can be terribly isolating going through all this stuff. We've all been there at some point and we are all here to help each other.

Based on your list he does sound a lot like my ds, excluding the physical and violent stuff as my ds tends to implode rather than explode iyswim.

I'm no expert and only have my own experiences with ds to go on, but imho there is definitely enough there to warrant further investigation. I would think your GP should refer you to a paediatrician based on the things you list.

If you do go to your GP, try to get referred to a Developmental Paediatrician rather than the Community Paed. That said, not many GPs will refer straight to Dev Paed as there aren't enough of them to go around. We were lucky as our Comm Paed works with the local multi-dip ASD assessment team as well.

The school are able to refer him as well, but in our case the school steadfastly refused to see there was a problem and we had to do all the legwork so-to-speak.

Its well worth pushing now as if he is likely to find transition to secondary particularly tough and it would be good if you could get some support in place for him beforehand.

While you are waiting to be seen by the Paediatrician, you can be pushing the school to give him extra support with his social/communication issues. He doesn't need a diagnosis to get help and support. As others on here will tell you, you are the expert on 'your child', you know best where he is concerned, so don't let them fob you off.

This page from the government's website gives some basic information on the Special Educational Needs process and you can download their 'Guide for Parents and Carers here.

In the first instance he should at least be placed on School Action and given an IEP (Individual Education Plan) which will set out the areas he needs help with, what the school is going to do to to help and how they are going to do it and will also set targets for him in each area. They are usually drawn up by the SENCO and in our case we are allowed to attend the review meetings and they are also attended by his teacher and in future will include the ASD inclusion team and the Ed Psych as well. If he doesn't make enough progress or meet his targets on School Action over a few IEPs they can progress him onto School Action Plus, which is when outside professionals and agencies become involved in the process.

Hope that helps a bit. It all seems really big and scary when you first start looking into it, but you do start to get your head around it. We have only been going through the process since November 2009 ourselves.

Oh - and don't stop asking questions and coming on here for help and support. This is a very supportive place, the people are lovely and you will learn far more here than you will ever learn from books, websites or the so-called professionals.

Another chat with DH tonight to try and get him onboard.

Not helped by the fact that DS2 (very NT) has recently turned into the spawn of satan

Thanks for all your support, getting an appointment with the SENCO next week.