Starting on the road to ASD / AS diagnosis

[nenevomito]

My 4yo DS has been referred to the Ed Psych in school and also for clinical assessment by the GP for possible ASD / Aspergers. I say possible as we're just at the start and nowhere near a dx yet, but that is what the GP is looking for.

When he was at Nursery, they would report him getting frustrated and angry and that they thought it would do better in school where it was more structured. He started school in Sept and by the end of the first term, they wanted to talk to us, not because he was being naughty or unpleasant, but they were worried about what would happen when he moved into Y1 where things were more structured as he was lovely, but struggled in the classroom environment.

They also explained that he was struggling socially - in that he was happy for other children to go and play next to him, but didn't seek out friendships and was alone. He has some imaginary school friends that he plays with and tells us about. School have said since that he plays with another boy, but if I ask DS if he has played with X he just looks blank and doesn't respond.

The school have been brilliant. First off for picking something up early and doing something about it, but also because while they have not mentioned ASD / AS themselves, they have alerted us to a lot of things that DS does that we are used to, so don't notice any more, but are not within "normal" ranges of behaviour for school. They are working with the EdPsych to sort out how to help him out best in school and gave us enough information to go to the GP. It's not all ASD assessments though, as school are also saying that in some areas DS is "intellectual" and they believe he is G&T in terms of language and creativity, so on top of having to suddenly learn about ASD, I'm having to learn about what the G&T support entails as well.

The GP was very to the point and said he thought it was more about where he was on the spectrum rather than whether he was on the spectrum or not and has been supportive, but the process for assessment as I am finding out, it going to be a long one.

This is turning into a long one - stay with me if you can!

The problem I have now is support for me. I tried talking to one friend and her response when I was trying to tell her about it was "oh well all children do that, its nothing". I couldn't get through that if I have 3 teachers, a SENCO an EdPsych and my GP saying that it is something, that I have to take notice. Also she said "well my DS does that, and he's OK" as if she wanted to reassure herself.

My other friend was very much saying "well you don't want him to have a label" and "aren't you worried about labelling him so young" and "it all sounds like an overreaction to me." When I tried to explain that I just wanted to make sure that if he does have aspergers or ASD he gets all of the support he needs she said "well I wouldn't want my child to be labelled like that". At that point I wanted to hit her and say "Oh and you think I do?" Of course I would rather we weren't going down this route, but what am I meant to do? Say, thank you school and GP, but I am going to ignore your advice as I don't want my child to be labelled. Surely getting him the right support is more important?

My parents know, but Mum thinks that its poor teaching?!? at the school and Dad thinks that its just because he's young. Both think I am doing the wrong thing having him assessed because (and get this) "It will be on his record forever". What is that meant to mean.

Where this leaves me is with all of the worries and upset and concern that any parent has when they are told there is a problem with their child, but friends and family that I have just given up even trying to talk to. So I am here. On the internet. Telling Strangers, who if they have got to the end of this post deserve a medal.

Thanks for reading.

Me too. Knickers in the bin. Night babyheave, night moose.

When I said "Me too" I meant bed time, not me self-centred!

rofl, it's ok - I got that

Night tabula.

night

I'm doing that whole, I know I should be in bed, but I can't quite be bothered t actually go thing

I want to second the get the statement now comment.

Its more work for them and it also means your child has a legal right to the help listed in it.

You really want to get taht now - before he goes up as school.

It is my opinion that each new school you encounter will decide that everthing that happened in the previous school was irrelevant and will insist on starting again from scratch. Having that statement means your child will have continuous help.

Aspie answer to broken elastic.....dont wear any.

Sorry about the hijack, but how do you edit your posts on here? Just noticed my spellin mistackes.

Hello asdad,

We haven't met, I've seen you around a couple of tims though and I'd like to belatedly welcome you to the sn board and say I really appreciate the insight parents and other adults who have ASD offer people like myself and dh who have a child with AS that we are trying to understand and help. Thank you for sharing your experiences, both here and in your blog.

at don't wear any!

Anyway, the point of my post was really to say that unfortunately you can't edit posts, you can only preview them before you post and hope for the best I'm afraid.

Hi Moosmama

Sorry, I didnt introduce myself.

Im sort of married, white british, live in the South UK. Im 47, overweight and have just been diagnosed as Aspie again - as they lost my notes. Im higher functioning and use this to offset the problems I encounter. I am completely obsessed with the things I do.

I dont easily get embarrassed or get jealous and can usually answer whatever comes up without problem.

Ive two kids that live with me. Both mine, both boys one probably low functioning autistic, both diagnosed as Aspergers and both statemented and in the mainstream. One is now 12, the other just turned 16.

Not sure about a blog. I dont actually keep one, although I do write on several sites, and have a lot of bits on my asdad.net, although that is far from finished.

Not sure what dh, ds, dx all mean. Was told keep forgetting.

Some people think outside the box. I used it as fire lighters and then wandered off doing something else. I do have a somewhat different take on life that I am happy to share.

As for not being able to edit.....I suppose I had just better make sure I never re read anything, so I dont have to feel bad about my mangled spelling lol.

There are probably some here who will know me from other parents sites.

Sorry again for the hijack Babyheave.

DH, DS, DD, etc, Darling Husband, Darling Son, Darling Daughter.

DX diagnosis.

I expect you know ASD, ADHD, AS etc!

Hi Babyheave,

Re your comments:-

"He is on SA+ and I will be getting an IEP for him.

TWell SA plus is all very well in theory but it is not legally binding so it can so easily fall down. IEPs have the same problems; fine in theory but a poorly written one is not worth the paper its written on. Also on here they are known as "individual Empty Promise" and not always without good reason.
The IEP needs to be drawn up termly and with you present, if it is not decline it.

(BTW I gave the last IEP I had back to my son's secondary school).

"I brough up getting him assessed for a statement, but they recommended waiting for his dx to come through, but also said there was a green paper about taking the requirement away from the LEA so there may not even be statements, so they may not fund it".

I did previously explain that you were your child's best and only advocate and this is a prime example. They have told you a lot of old balls Babyheave, I can smell their bs from here!. Your child does not need a dx in order to apply for a statement. The Green paper is just that; statements are still around and will be issued for some years to come as yet. They are basically trying to put you off from applying for the statement; do not be sucked in by them!!!.

"I was in no place to argue, so plan of action is to send in a request for an assessment once I have the report from the EP.

Understand that re was in no place to argue but you need to expect them to throw up such obstacles. Waiting for such an assessment from the EP will only delays things more, when is the EP planning on sending the report to you?.

"I will talk to the SENCO first to see if she is prepared to request one as it would be good if it could come from the school, but will go ahead and request one myself if not".

The last part I would agree with, certainly not the first bit. Please, please, please do NOT get the school to apply for the Statement app!!. It is not necessarily good for such a request to come from the school. You have more power doing it yourself, if you apply you know its been done then. Also you can appeal if the LEA say no to your request; the school does NOT have that particular right.

www.ipsea.org.uk have model letters you can use.

I write from experience here, I would not want others to suffer the same problems as some of my DS's peers have from languishing for too long on SA or SA plus when they really needed a Statement. You need to think longer term as well because your son will one day be at secondary too.

Hi Babyheave,

BTW I never got to actually see the EP report; it went instead to the LEA.

Do not be at all surprised if the EP tries to also pour cold water on any statement application. These people are in the employ of the LEA and are under pressure from them re statements. The LEA will ultimately make the decision re the statement, not the EP.

Be kind to yourself this weekend, you've had a rough week all told. But you will ultimately have to brush yourself down and pick yourself up again and don your battle gear. This is because you my friend are your child's best - and only - advocate.

Babyheave, have come to this post late. Wanted to say welcome to this board, and also lots of (())s (shh )

The is he/isn't he stage is gut-wrenchingly awful. Then you have the stage where, instead of sending you away with some details of parenting courses and a feeling of wasting their time, the professionals say "hmm... yes perhaps you're right". The last hope you had that your child would grow out of it is dashed. We all know where you're coming from.

But then you stop sending yourself mad by the wondering about and analysing every behaviour, and can get on with doing everything you can to help.

My ds is coming up to 4 and was dx with ASD last year, also high functioning/Aspergers (the distinction is being phased out apparently, it's all just ASD with varying degrees of severity. And actually a dx of HFA/AS is not necessarily any easier even if perceived to be 'milder'. Dc with ASD have very spiky profiles. But won't get started on that now).

Anyway, just wanted to say hello, and hope you stick around. There is a huge, huge amount to be learned from posters here, both with navigating the maze of state support, and day-to-day advice.

Have you looked at ABA (applied behavioural analysis) at all?

Ah, asdad I think my ridiculously overtired, addled brain has managed to confuse you with BSDad, who appeared on Mumsnet SN this week and linked to his blog about his 3 year old son. One letter difference in your names was obviously too much for me to process and the two of you somehow morphed into one person in my memory, although a quick search confirms you are indeed two very different people. Apologies.

That said, it was your insight as an adult with ASD that I was referring to, so the thanks still stand.

No Worries.

Thanks for the thanks.

Huge Hug for Babyheave ((((Hugs))))

If you need a hand with the statement, ask.

Oh and please remember that having Aspergers isnt exactly the end of the world...

Most of our managers are believed to have it.

I second that, dh realised at ds's IEP review that almost the entire team he manages at work most likely have Aspergers, as do a large percentage of the company as a whole.

He works in IT ,in a building full of computer programmers and the new project management system they're implementing builds in what is effectively 'transition time', to give staff time to process and adjust before moving on. He suddenly realised that what we were discussing doing with ds at school was exactly the same thing he's doing with his staff at work!

All of his team are well adjusted happy individuals with good, well paid jobs and in many cases lovely wives and several children. I find this really reassuring when I think about ds's future - although he wants to be a games tester and not a programmer.

Hi All and thanks for all of the posts. I really am learning here and I do appreciate all of the support. Its good to have it from somewhere.

I take on board everything you are all saying about the Statement.

I have to take you into my head where you will find a good deal of realism but also a fairly large chunk of denial which is still hoping that there is nothing in it. I know you realise that logic has nothing to do with the hope that he will grow out of it. Getting an LEA assessment involves me going one more step down the road to accepting that this is happening. Me waiting for the report from the EP, which I should get by Easter, apparently or for the assessment with the Dev Paed, just gives me the excuse to deny it all a bit longer.

I know you're right, though and I'll give myself this weekend to just enjoy time with the DCs and then deal with it on Monday. Thanks for the link to that site, its very useful. I think I should tell the school though. To be fair they have been very good with me, so it seems only reasonable.

I am very much looking forward to the day when I can spend time with DS again without relating everthing he does to what is happening. Spending time with him this evening when he was being bright and chatty and lovely made it very hard to get over the whole denial thing despite everything that was said on Wed!

Thankfully no one has said anything stupid to me today, but the chap who turned in 20 mins late at work got an earful, which made me feel better .

Glad you're feeling a bit better, hun, lol!

Moose - I work with a lot of IT technicians and I hear what you're saying!

Ellen.

Awww thanx hun.

My DH is an IT consultant with a degree in Maths, and me in Physics so we had no chance. We should get on to the longer ring finger than index finger bit next.

What about fingers? Is the index finger the one nearest the thumb? In which case yes my ring fingers are longer than my index ones.

That's very unusual for women. There's a theory that long ring fingers mean exposure to lots of testosterone in the womb and can be an indicator of ASD ( and being good at maths.) My ring finger is longer than my index finger also. My DS1's is much longer as is DH's! Maybe a genetic indicator, definitely not proven, but interesting.

My right-hand ring finger is a good cm longer than my index finger, left-hand is about half a cm. Dh's ring fingers are the same length as his index fingers. Ds1's are like mine, yet the majority of cases of suspected AS in our family history are on dh's side. There are a couple on my side, but dh's family was actually quite famous within certain circles and well known for being, er, eccentric.

Strange thing is, last time we checked I could have sworn dh's ring fingers were longer.

I really need to get out more.

It's only an interesting theory, good for a chat down the pub, etc. My DS2 has the shortest ring finger of all of us and he's the only one who's DX! Mind you, he is the least good at maths!