11 year old just been diagnosed with ASD

[ILCTM]

I've suspected my son was potentially on the spectrum from a really, really young age. He's now 11 and has had so many assessments over the years - usually resulting in one appointment and then being discharged, but finally after a few in-school assessments, as well as a one to one with him, we've now received the diagnosis that he is autistic and they've now discharged him. Is this what normally happens? I just assumed that once a diagnosis was given, they'd then offer some kind of help maybe, but all I got were some recommended local groups that I could go to and some online resources.

We were informed of the diagnosis over video call and I asked the lady where is he on the spectrum, as in is he mildly autistic, moderately, etc.? Is there a type of ASD that he has or is it just under that one term, ASD? The lady said that ASD is the diagnosis and as for where he is on the spectrum, she said I will receive a report and to look at the wording to give me an indication, like if they use the word 'severe' or 'extreme' or 'mild' etc. I received the report and a lot of it seemed like typical shy kid behaviour, but some of it more towards ASD.

So I was just wondering what the point of getting this diagnosis was if that's where it ends? Is it just to get the ASD label so that his school are aware?

This has been our reality too.

Diagnosis and no support subsequently.

Pretty much in our experience. Do look out for local groups though. Near us there are lots of social and holiday activities for autistic children who maybe don't need a huge amount of support apart from socially. There might also be parents support groups which some find invaluable.

it is great that you now have a diagnosis. Make sure the school know and have strategies in place eg around lunch breaks (quiet spaces if he wants). You will have to do some of the work now around finding out what's best for him.

when/f the time comes, make sure uni know too. That makes a huge difference.

My son was also diagnosed at 11. And sadly for him the story is the same as yours. He went off to secondary school with a diagnosis but no support. Us parents got sent on a parenting course some months afterwards, thats all.

I envied those kids who got their diagnosis earlier because they got better support (and didn't have to completely flounder in secondary), and also my son went from this quirky, happy, funny upbeat boy in primary school to a kid with poor self image, poor behaviour, school refusal etc. He's bounced back in year 10 though!!

It’s very much a post code lottery on what post diagnostic support is offered. Where we are, there’s nothing and even if they did provide something I suspect the waiting list would be years long anyway.

IMO a diagnosis really helps in advocating for Dc, without one schools have a tendency to fob you off and or deny Dc need the level of support they do.

Yep it's pretty much 'you're autistic, bye' in my experience.

I think the value in the diagnosis is really for your child and for you. There's little support externally.

This was also our experience. But with the caveat that the detailed report had lots of suggested possible interventions. Some of which DS1’s school had already put in place and others which they were happy to try introducing. School then also put him into a social support group (school have generally been fab).

For us, with a child who was/is flying academically and is rules driven, it’s more about self understanding and being able to flag it in advance to clubs etc who are then pretty good (usually) at managing the situation. I’m also seeing it as future protection in case Secondary is a nightmare.

My son has just started year 7 and I don't think he's loving it. "Meh" is what he said. He's not much of a talker about 'stuff', so it's hard to know exactly how it's going. His main issue is socially and just a few little quirks, like he has a very bouncy walk. I say he's like a piece of spaghetti blowing in the wind 😆although I'm starting to wonder if he might have dyspraxia too, but he's had so many assessments and nobody's mentioned that.

I didn't realise that it was just about getting a diagnosis and that was that. The school were pushing for the referral, I think they get extra funding if he gets a diagnosis perhaps, because I wasn't that fussed about a diagnosis. He is who he is and for me personally, I'm not a huge fan of labels. When I think back to growing up, you had the odd quirky kid and they were just that, quirky, but now there seems to be so much focus on labeling, which is fine but ASD is such a wide spectrum. We must all be on there to some extent. I just thought if it gets him extra support at school to make things easier, then it's worth doing, but I guess now we have the diagnosis, I can discuss it with them if he starts having any difficulties.

The school don’t get extra funding if he has a diagnosis.

This is my worry. He had a roughish start to primary school, no real friends (although he never seemed bothered about that), then we moved to a different area when he was in year 4 and he just became a different boy. He made a couple of friends, goes to a youth club once a week with them, goes to the park with them occasionally and he's just become a much more typical boy, but now he's at secondary, his 2 friends are in his class, but I know how friendships can change so much once you start there. Everything changes and I'm so worried that my son will get left behind as his friends make other friends.

I was under the impression they did, to help "fund" the additional support

It sounds like he's settled into his new school quite well. Have a look at the resources available on the National Autistic Society and ADHD Foundation websites (ADHD F have autism content too). I am a NAS certified trainer and we are not all on the spectrum. It's really important that your son understands who he is. I recommend reading Untypical by Pete Wharmby - it's fantastic - and finding some resources for your son that will help him understand what autism is. What's important is that you both see it as a difference, not a deficit, it sounds like you are doing your best to support him, which is great. It's a tough journey to navigate.

Schools receive part of their budget for SEND, however, it's not even ringfenced for SEND, and certainly not for individual children, unless they have an EHCP.

Functioning labels like 'high functioning' are not helpful either. If someone is labelled as high functioning, it completely ignores the times or particular parts of life they find more challenging.

My daughter is very bright and about to go to university, but also has days when she cannot leave her bed, due to anxiety. So, is she high functioning? Labels like that just mean that people's needs are not met .

I would thoroughly recommend "Nurturing Your Autistic Young Person: A Parent’s Handbook to Supporting Newly Diagnosed Teens and Pre-Teens" for you to read through. We got a diagnosis for our 12 year old this summer, and similar to you there was no real support afterward. We have just got loads of books, spoken to some professionals etc and tried to get out head round it all. The big difference is now we understand all sorts of behaviors and needs as being part of his wonderful autistic self, and not things we should worry about or try and change. We can also plan ahead or make adaptations to help make things less stressful for him.

For your son, ours really liked The Awesome Autistic Go-To Guide: A Practical Handbook for Autistic Teens and Tweens and ended up coming downstairs to us with lots of bits highlighted, which was great.

@op you said about the autistic spectrum-

"We must all be on there to some extent"

That's not what the spectrum is. It's a spectrum of autistic people.

Yes and which is so wide-ranging, almost everyone must have at least a couple of those traits.

No. You are either autistic or not. Would you say everyone is a little bit pregnant?
Functioning level depends very much on the environment in which you wish the autistic person to function and how overloaded they are at the time. (I'm an autistic adult).
Wishing you the best in supporting your son.

It doesn't work like this. Your child's care needs are what matter - this isn't linked to how functioning they are.

Does your son have an ehcp? The school won't get funding just because he has a diagnosis, they get funding if he needs additional support.

The spectrum is a wheel where you plot challenges your child has, it's not a linear line where we all have some traits. I get sad sometimes but this doesn't mean I have clinical depression.

Sorry i wrote this poorly,

this isn't linked to how functioning they are.

I meant there's no such thing as a functioning level as it's so situation specific

@bryceQ please would you let me know where I can access the spectrum wheel you have posted? I have a teen diagnosed with ADHD and her school is convinced she is autistic (awaiting a CAMHS assessment) plus a seven-year-old who is diagnosed with ADHD and autism through the NHS.

@DorothyWhippleFan

There are tons if you just search autism spectrum wheel, just make sure it's a British site as sometimes the US has different criteria etc. Probably the national autism charity website will have good resources

Did you have any ideas of what support you wanted to get?

Schools will find it easier to put support in place to pre-empt problems if your child has a diagnosis. You will have to advocate strongly for what your child needs but without a diagnosis schools only seem able to act if there are problems.

It will also make it easier for them to get him special access arrangements for public exams (these are definitely possible without but I was told by the school that a diagnosis just makes it all much easier).

I thought I understood my child’s needs at the point of diagnosis (year 7) - and thought they were very minor - but the subsequent reading we did really opened my eyes. I hadn’t realised how much they had masked their way through life so far. We’ve been able to put in place so many things at home and school that I just didn’t realise they needed before and I believe that’s helped them unmask and avoid/delay burnout.

If your son has any sensory difficulties I recommend an Occupational Therapy assessment - that will give you very specific practical recommendations which was the best support we found.