ASD diagnosis

[Concernedoftunbridge]

My first post, so please be gentle!

Our 7 year old son has some characteristics of autism spectrum disorder (ASD). At home and 'out and about' he's generally fine, without any real problems. Unfortunately chool is a different matter. Despite high intelligence he's never really settled in or engaged with school. He plays up in lessons, does very little work, has little desire for friends and generally no social skills. He still achieves well though - above average for all subjects and exceptionally good reading. He's at a small primary school, and is managing OK overall, if not very happy.

After seeing child psychiatric services several times, we've now been offered an ASD assessment, but we're agonising whether to go ahead with it.

An ASD diagnosis would probably have little impact on his primary school (given the effort they're already putting in), but could have a massive impact on his secondary school life. We currently can't envisage him coping at all well in a big secondary school.

Alternatively, he might well get better. He's certainly a lot more 'normal' now than a year ago, but would be stuck with the diagnosis for life. This seems to make it difficult to get a driving licence, mortgage, life insurance, job, visit the US etc.

What would you do? Does anyone have experience of this border line ASD? What benefits did you see from an ASD diagnosis? Have there been any disadvantages?

Thanks

Hi.
Were in the process of a dx of ASD for DD (5), got initial dx of ASD. More tests next week. From what Ive read, (mainly on MN), a dx helps with support and access to services to help DCs. It can be changed...not stuck for life. Our pead said DD is currently ASD but may well be AS when language improves.

Hope this helps. :)

Hi Concerned

I'd go with how he is now and it sounds like it might be worth exploring a dx......don't feel like it's a life sentence, some kids (esp borderline) may lose their dx later in life. If you don't, it'll probably prey on your mind:)

This seems to make it difficult to get a driving licence, mortgage, life insurance, job, visit the US etc. Not sure any of this is true. Who would know what dx you had if you didn't tell them?

A dx has really helped us. It's not only for you - it's also for your child. So he can appreciate why he feels he is on the wrong planet somedays.

My DD is much younger,she's 2.9 and we got autism diagnosis 4 weeks ago so its still kinda fresh. I was not sure about it either, in fact I put my head in the sand for about 6 months and postponed an assessment because, for me anyway, I didn't want and wasn't ready to hear it and I sincerely believed that with all the progress DD had made that perhaps she would outgrow the problems she has - mainly rigid thinking and lack of reciprocal and receptive communication.

Now that we know a lot more doors have opened up to us and we have already learned through a wonderful private SALT how to best tackle these issues and help our amazing DD do her best.

And like everyone says, the diagnosis may change in time but if assessment means being able to pinpoint strengths and weaknesses and be able to get help and target those.

If your worry is your child being stuck with a diagnosis/label you could do an assessment privately. I have a friend whose son has Aspergers and only one person at his private school knows plus a few teachers and there is nothing in his medical records to show this. I'm not saying this is right or wrong but it is what she did. Her son was diagnosed privately at about the same age as your son.

Good luck whatever you decide.

I have a driving licence, had no problems getting a mortgage or life insurance, I had big problems getting a good job before I had the diagnosis but far better options afterwards because I knew my own strengths and weaknesses better. I've visited the US etc and many many other countries without any issues. I'm on the autism spectrum.

Does that help?

Hi Concerned!

Your ds sounds very capable academically and, if I have picked you up correctly, struggling more with the concept of school and socialisation - too many people, too much noise - possibly things like that?

My ds is autistic and we decided to go ahead with a formal dx. A dx provides you, your family friends and most of all ds (when the time is right,etc, etc) with an explanation as to why he behaves in a certain why. Why he perhaps likes routine, quiet, soft clothes, being on his own, dinosaurs, and why he finds dealing with other children difficult, taking turns difficult, why he likes long chats about specialist subjects and stuff like that.

A dx as Indigo says provides an explanation as to why he may feel he's on the wrong planet at times and that very important - perhaps more so when he's a bit older (thinking teenager here when hormones make things even more complicated!)

He may be managing now but when he goes to big school unless your ds has a formal dx and statement of special educational needs then school don't really have to help you that much - having things in place could make things easier for him now and in the future.

Good luck x

My DD was 13 when she got her dx of AS at the end of a year of hell after not coping with the move to high school. DD2 is very similar with lots of sensory issue but has cope ok with school up to now. We've accepted the offer of assessment for her eagerly because we don't want to be sitting around for a year waiting for her to get the help she needs when she moves to a bigger school. There's no guarantee she'll need it but high school can be a big shock for children who are just coping in a small primary. I'm convinced this is the right thing to do.

COT

I would take the assessment hard as it is for you.

I would also seek a firm dx (it will help you all ultimately) and apply for a Statement asap from the LEA particularly before your DS reaches secondary school. A dx as well will open more doors that will otherwise remain closed.

Statements are also for those with social and communication difficulties. Many children if they are on the ASD spectrum can find secondary school very difficult without adequate support (which at that stage is a Statement).

"Despite high intelligence he's never really settled in or engaged with school. He plays up in lessons, does very little work, has little desire for friends and generally no social skills."

I think you are answering your own question. If he is unsettled and has no friends you may be risking his happiness, future mental health, life prospects etc etc. If he doesn't do what his teachers say he will get into trouble / poss end up excluded from school. Life is about more than academics. Most jobs will require some people skills, taking orders, following rules etc and this is part of what we learn at school.

You want him to be happy and that means to an extent being able to get along with others and form meaningful relationships and by the sound of it he is going to have to be taught those skills in the same way the kids who struggle with maths and reading do - bit by bit and repetitively.

If you don't want to go the dx route look at ABA consultants who run social skills groups or at social services depts - people with experience in teaching social skills to children with autism. ABA can be expensive but his needs might be quite limited eg he might just benefit from a weekly group and some training into school / support at breaks or a social skills group in school.

I know people who have gone the dx route and others who haven't - whichever you choose you will have to become an expert in how to teach social skills and approach it very differently than with a typical child.

I once went to a talk where the speaker described two autistic twins he had worked with. One was very bright and academically successful but ended up lonely and with mental health problems the other did not achieve educationally but had a good group of friends and was happy. Which would you choose for your child?

Bright ASD children often need as much support as more severely autistic children as they are more likely to be out in the world having to cope with work and relationships and they need lots of help to make a success of this and often just to understand it.

You don't have to get a dx - although if you know of a good HFA / Aspie secondary school you might want to; but you do need to get your son help and support either through the education system or via your own efforts. Because he can be taught to follow rules, join in, make friends etc but he won't learn in the same way or be motivated by the same things as other children - he will need extra support to do this. Also you won't be helping him by letting him be the child who is seen as naughty for not following the rules / doing his work etc or the kid the others steer away from. I have just watched a friend's child move to secondary who had no support in primary. He has a dx but his parents have never sought a statement / any 1:1. He started being teased on day 2 and I suspect it won't stop until the day he leaves. He has acquaintances but no real friends so his day must be lonely and scary.