Has having an ASD diagnosis helped your child?

[HildaSaysWhat]

I am sure that my son (13yrs) is on the autistic spectrum. As well as some easily identifiable behaviours we have a strong family history of men with ASD. He is high functioning and coping well at school. He thinks he is autistic. I am unsure whether to pursue a diagnosis or whether there is any benefit to that.

I know of two teen girls who had late diagnoses and had had terrible struggles with their mental health. On diagnosis there was a sort of light bulb sense of relief that there was an explanation for their struggles.

I would really appreciate any input or experience of this situation.

Have name changed for this but am long standing mnetter - cod, red rug, Pom bears anyone etc!

Thanks

Evening bump.

it will provide legal protection my child, eg, if he has any involvement with the police (he would be treated as someone with a disability). Also when me/ husband die, because we also claim dla and have ehcp's then the 'system' knows about them. When they are adults, they will have the court and social services looking after their finances to help protect them against financial abuse, it will be known to the local authority that they cannot live independently.

Thanks Wizzy Wig. DS will be fine living on his own as an adult, as I said he is high functioning - academically able etc. I have worked with children who have an ASD diagnosis and he is on a far milder end of the spectrum (so to speak) than them. But I am still sure he is very firmly on the spectrum. Sorry, I hope you get what I am saying - I’m absolutely not trying to make comparisons. This is why I am conflicted as to whether a diagnosis will actually do him any good. He finds change difficult and upsetting - even minor ones. He hates and is upset by loud noises. He doesn’t always understand appropriate boundaries He can be very black and white with his thinking. These are the sort of things where I think being able to explain a bit why he feels/acts this way would be useful but in terms of financial or legal support I think he will be absolutely fine doing that sort of thing for himself.

Thanks so much for replying.

I'd say go for it because of the benefits it can have throughout his adult life. Does he want to go to Uni or do FE? If so, a dx can bring support at those levels.
Also a dx can enable him to ask for reasonable adjustments from an employer.

Even if it's just to confirm what he already thinks about himself, he obviously realises his differences and should be reassured by a formal dx.

Ds was late diagnosed last year at 14. Like your ds, he's what used to be called 'high functioning' - he's academically able; very well behaved in school. Like you, we have various family members who are undiagnosed, but I confident would 'hit the criteria' for diagnosis. For ds, and me as a parent, the diagnosis has been nothing but positive -although in real terms/support it hasn't made any difference - the school had already put systems in place to support him. But what it has done is allow him to very overtly and openly acknowledge that the stuff he finds hard (sensory issues; b&w thinking; rigidity in his thinking; deserve for clear rules and those to be kept to). And then that's allowed us to therefore be more honest about the challenges, when he does need to manage them, and how. So sensory stuff, both of us are now more alert to and intervene faster - to get him some space and time out - even if just escape to the loo for 10 mins, whatever. Whilst in theory, we could have done all that without a dx (& did, to an extent) the dx takes all the pressure off - it's easier to shrug and say 'ah, yes, you have ASD, you find that hard, so let's try xxx' - where before ds would beat himself up that he couldn't cope in crowds, or hates interactions in shops, now it's not him, it's the ASD. I don't know if I've explained it well, but I can say, for all of us, getting the dx was a huge relief, and the dx process itself was really positive, and quite eye-opening as we all began to realise how much we were managing already, and how effective some of our existing strategies were.

The other really positive thing for ds, is he is in a gang where we already knew there were a few ASD dx - so ds went out with his mates the night he got his dx and immediately told them all - at which point two other mates (who we didn't know about) also said they had ASD/ADHD diagnosis.

The openness within his group means that are very aware of their differences (to each other), so do a great job of pointing these out to each other (mostly in a supportive way! Sometimes less so!) and supporting each other: they are forgiving of x wanting to stay home, or y needing someone else to buy his can for him as he can't face an unknown shop assistant today... I know ds is very lucky there, but ime many ASD kids are quite good at finding each other and forming little tribes of understanding :-)

Our son has just got an ASD disgnosis. He always had 'autistic traits' right from being at pre-school but we never followed it up because we didn't want a label that may exclude him. As he got older we were concerned he would be going to college and we would not be around to support him. His main issues are with communication and having a diagnosis we thought would get him more support. He has become more aware as a teenager that he is a little bit different - socially anxious/not wanting to talk to people. I think it was the right thing for our son but it took me 10 years of convincing! Good Luck!

Thanks so much for the replies. @fanomoninon your sounds like a very similar situation to ours. How did you go about getting a diagnosis?

I think the problem for my ds is that other than our family members who are also high functioning, the other boys he knows at his school who are openly ASD are less high functioning (quite disruptive, struggle in the whole class setting etc) and would not be a club he’d want to join if you know what I mean. Sorry I know that doesn’t sound great. Although, it may be that like your ds he has friend who are ASD but haven’t told people about it!

Oh and sorry for the old terminology, not sure what the right words are these days. ‘High functioning’ does sound rather dismissive of those who aren’t.

I totally understand - I know we are lucky, but have other friends with children who aren't so lucky (harder for girls at the mo I think too) Ds does lots of typically ASD-nerdy stuff (think coding/computers/board games etc) so his gang are atypical - or typical depending on your perspective!

We have been humming and ahh-ing about a dx for years and years - but secondary school was definitely the stage at which he started finding things harder, and at that stage we went through the GP. The first time questionnaire school completed he didn't hit the threshold to be explored further - then he had some intervention for another issue, and a very perceptive staff member was able to draw out how much ds was masking and how hard he was working to manage things himself, and suggested she resubmit the school questionnaire and try again! So our overall wait time has been years, but for various reasons we then ended up on a fast track dx path, so things happened disconcertingly quickly once we were in the system.

We've worked really hard with ds to make sure he is aware of some of the amazing skills that people with autism have and that we see it as difference rather than deficit - neurotribes was great for that (I spent a lot of time reading aloud!) and the Ch 4 documentary with Georgia Harper and Sam Ahern (Are you Autistic) which followed adults through a dx process and also talked about neurodiversity in a very positive way and showed a range of very socially skilled and capable autistic adults was great (slightly female focused, and annoyingly not on All 4 at the mo). It helps that he has a tech/geek/science focus, so lots of autistic role models in those worlds!

My children received very early diagnoses, I see them as giving the dc answers as to why they find some things difficult and pointers for me on how to support them. Ds is now 23 and dd is 15.
SIL was determined that dn wouldn't be assessed or "labeled" with any difficulties going so far as to pull him out of state school when his teacher raised concerns age four and placing him in an independent school as they seemingly were happy to comply with SIL's wishes.
I think it has caused dn untold damage tbh, he is almost 30 and received a diagnosis through university just before New Year. He has mental health difficulties, he never had the answers he needed, he didn't get the support he needed at school either as SIL blocked that as well and he was taught none of the strategies that would have helped him cope with life.
He's at uni now as a mature student but is just as isolated as he ever was as he has not had any social skills training and is selectively mute . He still lives at home and probably always will as he has none of the required daily living skills either.
I feel incredibly sad for him, SIL's determination that he was "perfect" has come at a great cost to her son. She saw our children's diagnoses as them being defective rather than as signposts to support.
I am sure she regrets it now not least because she will have dn at home with her for the rest of her days when she planned that he would leave at eighteen but it isn't her that has ultimately paid the price.

There was a thread a while back from a woman with autism who was going to get sacked from work for 'not being social enough' and 'not taking her turns at the tea-making'. Clearly I'm paraphrasing, but... diagnosis gives you a protected characteristic. You don't have to use it (the woman on the thread didn't, she left the job) but I think in today's workplace that's an incredibly positive thing to have.

Watching with interest as we are in exactly this situation.

GP referred DS13 to CAMHS for assessment for autism, but CAMHS (hugely overstretched in our area, and I suspect in all areas) refused to assess him because it wasn't clear that he had significant difficulties functioning at the moment. Now we are debating whether to get assessment done privately.

We are in a very similar position to you Hilda but have decided to go down the assessment route with our son. He is 14 and in year 10. We have always suspected he is on the spectrum. There was a few comments by teachers at primary but he has struggled more at secondary, not that the school had particularly noticed. He certainly has come to realise that he is different and that in itself has caused some issues. We were also concerned that he would not cope at uni without a bit of support.

We approached the Senco at his school last May. Our local child development centre/autism pathway only really accept referrals from schools for children of school age. The Senco was initially dismissive but agreed to consult with his teachers. After feedback from them and advice from the educational psychologist she agreed to refer him. He also has handwriting issues so that is being checked as well. We had an initial appointment with the community paediatrician in December and he is waiting for an assessment with the speech and language team and occupational therapist.

Unfortunately the school have been completely unhelpful as far as offering him support. It is a grammar school but I don't think that should make any difference. They have said they will do things and don't, they won't communicate with us and he is still just as anxious and isolated as he has always been. The only thing that they have agreed to do is let him drop his foreign language gcse as he was incredibly stressed about it.

I do know that things could be much worse. He is going to school and just about coping but it is difficult as a parent to see your child struggle when a little bit of understanding and a small amount of intervention could make his life so much easier. He has said he would not be able to cope with a school move, so we are trying to make the best of his present situation. I'm hoping that if he does get a diagnosis the school might become more helpful.

Good luck with whatever decision you make Hilda!

Punxsutawney - that sounds tough :-( What else would help your ds at this stage? Ds gets very anxious too, but actually going into GCSEs has been easier for him, as he's doing subjects he loves, and there are less of them to juggle. DS has handwriting issues too & a dyslexia dx, (although he's very mild!) which means school provide a laptop for him in all lessons/exams - that's made a world of difference, and taken away the constant stress of getting told off for handwriting/messy book: might that be an option?

Ds's school are pretty good on wellbeing, so he's done art therapy; lunch time groups; mindfulness course; and has a 'time out card' etc - but actually what made most difference probably was the HoY juggling things behind the scenes so he was with a few supportive friends from Y 10 onwards and built up his support network ...

Yep, been great for ours.

Wow Fanomoninon that does sound like the school are supportive, our Ds would benefit from all those things. There is just nothing on offer at his school. There is no point of contact for him, not one member of staff that he feels he can approach, no groups, no support with handwriting until he is assessed. He would benefit from someone checking in with him as he just can't approach anyone even if he is really struggling. He gets anxious if he has to find a room or teacher he is not familiar with. He gets overwhelmed and sometimes struggles to remember or process things when it gets too much. But you wouldn't know from his behaviour, he just sits silently without even a friendship group to lean on. We tend to have to deal with the fallout when he gets home. The school tend to ignore our emails too, communication is poor. I get the feeling that they think if they ignore us we will just go away.

I know we should have moved him to a different school, it's just been awful. He's vulnerable to being picked on too, I won't put on here all the things that have happened but the school have made excuses about many incidents. He's even been mocked by a member of staff which made other children laugh at him, although that teacher no longer works at the school. Through all this he has told us that he won't move school because he just couldn't cope with the huge change that would bring. He said he would rather stay and be unhappy than move. We should have just moved him anyway, I really don't know why we didn't. I guess we were concerned that if it made him even more unhappy we would be in an even worse situation.

In hindsight we should have pursued a diagnosis a long time ago. I do feel guilty that we didn't. I'm sure things would be better for him now if we had. He seemed to cope better with his difficulties when he was younger, and because he was academically able I thought that we wouldn't be taken seriously.

I guess my advice would always be to try and go for diagnosis if you can. We obviously don't know at the moment if he will even get one but I think he might. I certainly hope that whatever happens that we can try and make his remaining years in education a better experience because things have been pretty awful since year 7.

Ahh, @Punxsutawney - so much of that is familiar. Fwiw, I would have posted a similar picture to you in Y8 - ds had been moved away from his mates and was very isolated. His teachers saw a well behaved, academically achieving, if somewhat introverted child, but not how hard he was having to work and how much it was stressing him. I could see him unravelling and was feeling really guilty for not having pushed his dx earlier (we've had niggles for years, but never enough to feel like a dx was worthwhile or indeed, like a dx would be forthcoming). Skip on two years, and he's so much more settled, happier, and more controlled.

Are there any clubs at your ds' school where he might meet likeminded peers and build some friendships? For ds, coding club was great, and gaming clubs even better - they are also helpfully run by lovely young male teachers, who have been brilliant at support in a low key/friendly-face type way. Is there a HoY/head of pastoral care who you can go in and see for a quick meeting as a start of year thing? I've found things progress faster with a bit of face to face... and there's just a different emotional engagement.

Another thing that really helped us (I think someone on here suggested it) was that I also got ds to map his levels of anxiety over the day on a chart - and then we talked about what would help with his most anxious times. A few things we implemented there at home (e.g. preparation for the next day the night before and getting up earlier - he hates rushed mornings!) and also stuff I could then target at school - eg he was finding lunchtimes hard, so asked for specific support there. (he helped in school library doing IT support and also had free reign to hang out in the LX at lunchtime, where there were a weird mix of misfits and rebels (all very Breakfast Club!) playing board games! He only used it occasionally, but knowing he had the option helped.

I think I also have to remind myself sometimes that he is also a teenager - a group not known for their happy-go-lucky attitude at the best of times ;-)

@Punxsutawney - my ds is at grammar school too. He is bright, sociable and has a good group of friends. We have not had any reports from school about difficulties which is why I sometimes think, what am I doing, why would this help him? But, at home though we see the mask slip and he has some odd behaviours around food, confined spaces and other things. I do think he masks very well and it must be a strain.

Does the first port of call have to be school or should it be GP? Anyone know where you should start if you go the private route?

We have not had any reports from school about difficulties which is why I sometimes think, what am I doing, why would this help him?

I'd never had any concerns raised about dd. When I had approached them it was 'she's fine!' Once I'd got her on the pathway she was dx quickly.

Yy headinhands - I’m sure that would be the same for us.

It's been good for us. It's led to much more support at school as well as from CAHMS and the Cygnet programme

Zzzzzz - why hasn’t it helped?

I’ve just had a response from a private assessor, it’s just under £3k for an assessment

Hilda I think the assessment process differs from area to area. In our county all school age children 16 and under that are referred get assessed via the child development centre unless they have significant mental health difficulties and then it would be camhs.

The child development centre follow the local autism pathway and they will only very rarely except a referral from a GP. They expect all referrals for school age children to come from the schools themselves. I know this can be different in other areas though. It can make it difficult if the school doesn't think there are any problems . My sons school were willing to refer as teacher observations had picked up issues but the questionnaires that they were asked to fill in were completed by a member of staff who doesn't know my son well. There was huge discrepancies between the school feedback and ours. Thankfully our son's consultant said that wasn't unusual and his referral was accepted.

We have not had to go down the private route which I am thankful for and we only had to wait 6 months from referral to initial appointment. Although I have no idea when the assessments will happen, the consultant seemed to suggest that my son would see her again at Easter but I guess it depends how long everything takes.

I understand the feeling of being unsure of whether the diagnosis is the right way to go. To be honest I didn't think we would have to go down the diagnosis route but I now feel it is the right thing for him, even if it just helps him understand himself a bit better. He is not in a great place at the moment and it is starting to have a negative effect on his mental health so I can't see a diagnosis can make things any worse. I can only hope that it actually might make things better and get him a little bit of support and understanding.

Maybe it might be worth you contacting his school Senco with your concerns from home and they might be able to explain the process in your area.