Can I ask - would you go for diagnosis for suspected high functioning autism?

(150 Posts)
AquaBlueBlack Wed 17-Feb-16 21:08:19

School (teachers, Senco and external support), DH and I are all similar in our thinking that ds has high functioning autism. He is functioning well academically, struggles socially and school are putting in place support to help him in the school where he struggles the most. At home he genrally is wonderful, though we do recognise the issues in social/ group situations but we support him through these. We are now being asked about pursuing a diagnosis. I am really in two minds about this but can't pinpoint why. AIBU to feel this may not be the best route and focus on strategies to support him is more important? any advice?

Keeptrudging Wed 17-Feb-16 21:19:20

Yes, I would pursue diagnosis. Firstly, the process may shed some insight into how you can best support him. Secondly, a formal diagnosis would give a more formal entitlement to support if needed for exams/at University. The process of diagnosis would also open your son's difficulties up for discussion with him. There comes a point where it can really help a child to understand why they are the way they are, that it has a neurological explanation, and most importantly that they are not alone with their condition. It certainly helped my son to understand his ADHD, and to meet other children who had it. He's proud of his 'ADHD brain' and accepts the positives it brings to his job in the music industry (ability to function with little sleep/lightning fast problem solving/hyperacusis/hyperfocus).

Keeptrudging Wed 17-Feb-16 21:20:15

blush feel free to insert a paragraph or two blush

summerainbow Wed 17-Feb-16 21:25:34

Always pursue diagnosis.
Other wise you setting your child for MH issues as they don't why the world does not work how they think it should.
I speak a relation of someone who has been section after 25 years of suffering with try to make work their way.

DrDreReturns Wed 17-Feb-16 21:25:43

By high functioning autism do you mean Asperger's? My son was diagnosed with asperger's at 4 and having the diagnosis made a massive difference to his early years at school. Because he had a diagnosis we were able to get a statement for him, which meant extra support in school which really helped. He now doesn't have a statement because he copes better at school, but it really helped early on. So I would go for a diagnosis because it (should) entitle you to more help.

AquaBlueBlack Wed 17-Feb-16 21:28:03

Hi DrDre yes my reading around the subject indicates they often co-exist or are one and the same/ mis-represented - can you drop a statement then - I was informed this was 'for life'?

DrDreReturns Wed 17-Feb-16 21:32:46

Well it's confusing because they're not called statements anymore, Education Healthcare Plan is the new name. A statement / EHCP isn't the same as a diagnosis. He / she will have autism for life, a statement / EHCP is a legal requirement for the school to provide support. Because my son coped well after the first couple of years in school he didn't need any additional support, so the statement wasn't necessary.
DW says EHCPs are harder to get than statements were.

hoopyloopycow Wed 17-Feb-16 21:33:16

I would definitely pursue a diagnosis.
My dd has just been diagnosed hfa, at 12 years old. I had my suspicions when she was younger but like you I thought that I would be able to put in place measures to support her.
Unfortunately it didn't work like that despite my best efforts and as a result her mental health has suffered hugely. To the extent that she has been an in patient in a mental health unit for the last 6 months and we are now having to look into residential schools for her.
Not trying to be dramatic or alarming and I'm not saying that this type of thing will happen in your situation but that has been the consequence, for us, of us not having proper support in place for hersad

DrDreReturns Wed 17-Feb-16 21:37:21

Also, you are on the right lines in that Asperger's and autism are 'one and the same.' Asperger's is a condition on the autistic spectrum, it's a subset of autism.

Biscuitsinbed Wed 17-Feb-16 21:40:38

Diagnosis now is not aspergers, it's HFA. I would definitely pursue a diagnosis, I have found it so valuable, especially in the much more difficult teenage years. You need that diagnosis to get what help there is and for allowances to be made at school. Also, to explain to the person who has it.

Schrodingersmum Wed 17-Feb-16 21:55:42

Would definitely pursue a diagnosis, DD held it together through primary but fell apart on transition to Secondary education

Its been 2 years of hell getting diagnosies and putting an EHCP in place.

It appears that often children with HFA hold it together till they reach the point often in adolecence where they can't any longer, if that point is on your horizion you will get support far quicker if youve already jumped through those hoops and got diagnosis EHCP in place

TickettyBoo Wed 17-Feb-16 21:58:27

I probably would but I understand not wanting to label your ds if that can be avoided - and that in your shoes I might be thinking it's just his personality rather than a condition. The fact school etc are concerned and feels he needs the support would swing it for me though.

hoopyloopycow that sounds hard, I hope life improves for your dd very soon

wannabestressfree Wed 17-Feb-16 22:01:24

Yes I would as just about to go through similar with DS3.
DS1 had an early diagnosis and it helped when like hoppy's daughter he suffered terribly as a teen and eventually was sectioned for over two years.

SauvignonBlanche Wed 17-Feb-16 22:07:04

I did for DS, it enabled him to have extra support at school and hasn't held him back in anyway.
He is now getting extra support settling into university.

hoopyloopycow Wed 17-Feb-16 22:15:12

Thank you tickety. There's no quick fix but at least she's getting the support she needs now.

PolterGoose Wed 17-Feb-16 22:15:27

Aspergers is still being diagnosed Biscuits and remains a distinct category in the ICD-10. The American DSM5 has placed all autisms under 'autism spectrum disorder'. HFA does not and never has existed in any diagnostic manual!

OP, yes, I would pursue diagnosis, I don't know how old your ds is but the earlier the better for many reasons.

MrsMook Wed 17-Feb-16 22:33:55

My friend is being investigated in adulthood. He's been identified with issues like OCD and anxiety, but nothing has quite hit the nail on the head.

He's had employment issues where people have interpreted his anxiety as incompetence. If it is HFA at the root of his issues, he would have more support and protection in the workplace.

Biscuitsinbed Wed 17-Feb-16 22:34:45

I was told by two different psychiatrists that it isn't.

Anomaly Wed 17-Feb-16 22:35:55

We took our DS to be assessed and basically got told not to bother by the consultant. The school does have support in place for him and we were told our DS even if diagnosed would not get any additional support simply because he's not severely affected by it. So no chance of an EHCP for example.

But I found talking to the consultant really helped and even if you choose not to pursue a diagnosis you can feel comfortable about that decision. Our consultant also said that the social issues can become more apparent as they get older and said we should come back if further down the line we felt a diagnosis would be useful. Even without actually getting a diagnosis the route there actually gave us a lot of information about local services which has been very useful.

Anomaly Wed 17-Feb-16 22:37:32

Posted too soon!

So yes pursue a diagnosis I doubt it will do anything but get your DS help.

PutDownThatLaptop Wed 17-Feb-16 22:38:30

A diagnosis and a full statement was very helpful for my DS at high school. He decided not to utilise any special help at college or University although life would have been easier if he had done.

Biscuitsinbed Wed 17-Feb-16 22:43:49

DSM 5 eliminated the diagnostic category ASPERGER’S DISORDER and lumped it with a more general category of AUTISM SPECTRUM DISORDER. “Asperger’s Syndrome” is still a part of World Health Organization’s (WHO) ICD-10, which does not contain diagnostic criteria, except for the “Diagnostic Criteria for Research”, which are presented below:

Youarentkiddingme Wed 17-Feb-16 22:44:32

polter said what I was going to! I describe my DS as having HFA but his actual dx is under DSM V and is ASC. I use HFA as its what people recognise.

I also believe a dx is important. You can support children, shelter them almost, but eventually they become autistic adults. A diagnosis allows them to be protected under DDA and have reasonable adjustments made at work etc.

NettleTea Wed 17-Feb-16 22:46:18

yes definately. Like others DD held it all together until secondary, where it all fell apart. Because we had no formal diagnosis it was the beginning of 2 years of hell for us all as a family, but we finally got a diagnosis, we are in the final stages of an EHCP which covers far more than the previous statement, from what I have gathered, and she may well get back into full time education in another 18 months.
Due to the problems with DD, we started the process of DS much sooner, as had already recognised his traits, at the beginning of year 5, so that we are better informed and can help him to know and understand himself better and hopefully not have the same problems his sister had.

The main thing is their being able to access help to understand themselves and make sense of the world from their perspective. DS, 9, is strangely able to do this far easier than DD, 15. Maybe the earlier he knows, the less of an issue it is.

JeremyZackHunt Wed 17-Feb-16 22:52:24

The bear pit of secondary school was part of the reason we went for diagnosis. A primary environment is very different to secondary. Diagnosis is a tool to get support to allow your dc too learn to cope in an NT world.

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