Autism Diagnosis

[handholdin]

My DS who is 18 has been diagnosed with Autism. We got the results back yesterday and really don't know how to feel.

The back story is we thought it was social anxiety and he had some counselling at school last year in September. His behaviour for the last 2 years has been really challenging refusing to speak to me or DH and only communication was through younger DS. After he finished his A levels in June we started having family counselling and he also had 1 to 1 counselling. It was through this that they suspected autism which is why we had the assessment done privately. They have recommended that he has 1 to 1 therapy with a psychologist specialising in autism but said that this shouldn't be short term he would need it over longer term.

I just don't know what to do now try to arrange a psychologist? He would need to get in touch with university to see if he could access any support. Just wanted to speak to anyone else who has or is going through this and any advice on what support we can get him.

I’m sorry, what did I just read?

He will only communicate via a third party? Why on Earth have you left it till he’s 18 to even look at this? Surely autism must have been mentioned before now?

In your one short post he’s demonstrated social communication disorder at a very high level, do you really think he is ready for university?

Im sorry to sound harsh but I’m incredulous.

There will be an additional support team at university who can advise on what they can offer, dd for instance has a fortnightly meeting with a coach who ensures she's organised and can help get adaptations sometimes, for exams they accepted the paperwork from her a levels as to adaptations.

Beyond that support is based on need rather than diagnosis, the label it's self doesn't get you anything automatically, he can be assessed anyway. My dd has dbt and medication, she has done since 14.

OP, I get it. My 15yo was just diagnosed with ASD and ADHD. We had no idea. None. And no one has ever raised any concerns, not even medical and teaching professionals in the close family. They can mask it so well! No issues developmentally, academically able, doing well until she hit a breakpoint and the walls came down.

I'm currently likening it to grief. You have to go through stages of shock and anger / guilt before you can start to move to acceptance and understanding. And it takes time. Take care of yourself and it'll get better, honestly.

Re finding a psychologist - www.bps.org.uk/find-psychologist

Just a word of warning, the school system didn't accept my DD's overseas autism diagnosis, nor did they accept her friends private diagnosis, we both had to go through the nhs for an official one, I was told that's because private doctors hand out the diagnosis their clients want rather than potentially a more difficult situation, eg complex mental health as autism opens certain doors so they think and it's more accepted. DD's psychiatrist has been quite damming of his colleagues who take money privately.

The SEN and Disability Code of Practice (2015) is quite clear on this point - there is no basis in law for a Local Authority to reject a professional diagnostic report simply because it was privately obtained.

And as for NHS staff being damming of private practice, the NHS simply can't afford to employ enough professionals to keep up with demand. Leaving kids 4+ years to wait for an NHS assessment is madness! We were actively encouraged to go private by CAMHS.

gogohmm That's not quite right.

@handholdin The people at university to contact are the disability support services.

My 18 yo DS is at Uni now. He is autistic and highly anxious but is thriving so far. He was diagnosed at 11 yo. Once we knew his A level results and which Uni he was going to we applied for DSA and contacted the disability team at the university. When he applied he had included info about his diagnoses in his UCAS statement. After an assessment D's was awarded DSA to cover adapted software, a printer and an autism specialist mentor for weekly sessions while at uni. He also got supported by the disability team at the uni to be allocated suitable accommodation (quieter block, ensuite), he is likely to stay on campus in halls for the duration of his course.

Thank you for the positive replies. Autism was never suspected by ourselves or the school at any stage. We thought it was social anxiety for which he had counselling at school but they never picked up on the autism.

@Chuntypops it must be heavenly living on that high horse of knowledge unfortunately autism isn't a condition where it is a positive or a negative especially when they are masking so well. DS is doing well at University academically but will need the support socially which hopefully the diagnosis will now help. He got all grade 9's at gcse and all A* at A level so yes he is ready and doing well at university.

Once he has a copy of his autism report DS will forward this onto the university and see what support they can offer him.

@motherofawhirlwind thank you for your reply. We are experiencing all those feelings of guilt of not suspecting it before, relief in that it explained so many of his past behaviour and grief which may sound odd to some but grief for everything he is not experiencing because of the way his brain is wired. I feel helpless watching him missing out on things that other 18 year olds are doing but what he isn't able to do because of the anxiety. We were told that anxiety was a symptom of the autism.

Ignore chuntypops, you have been doing something before now! And I fail to see how depriving an adult of their right to education would have helped! You are being very proactive, my daughter's autism was missed for years even though I brought up the possibility several times. It happens. My own autism was not even suspected by 4 different psychiatrists!

Get in touch with his university and google some local psychologists, see what they specialise in. Try local charities for advice/signposting.

Don’t be ridiculous. Seriously.

I haven’t suggested “depriving” him of his education. Quite the reverse. But there is no way that a child presenting with selective mutism can get to 18 without other comorbidities.

Given that he has very limited communication available to him, surely the priority is sorting that with INTENSIVE therapy and putting university on the back burner.

where is his EHCP? He should have had a full package of support, not this dithering so late in the day.

I despair because there is a narrative common in autism-affected families of “he’s ok academically so we won’t look beyond that.”

@Chuntypops If he wanted to go to uni, why stop him? More importantly, how would you go about doing that? You are very opinionated for somebody so ill informed.

Do you know how difficult it is to get an EHCP? I have 3 autistic children, none of them have been able to get one. Even my daughter who nearly died from a suicide attempt 18 months ago. And we're still waiting on her CAMHS referral! I ring them periodically and they say they're still waiting for someone to become available. And all the private providers in the area have closed their waiting lists.

It is extremely common, although more so in girls, for the first sign of autism to be a breakdown in adolescence. With no previous co-morbidities. And she's not left it until he was 18, he's been in therapy for a while!

Yes I do know. I have three autistic children and all three have EHCPs and I went to tribunal for two of them. It isn’t easy. But it’s absolutely necessary.

i appreciate I appear strident but although the system is awful and creaking, there ARE ways through it. I’m sorry to hear of your troubles, that must be incredibly hard to deal with, and very frightening. I hope she gets help soon, and I have found that being a persistent polite pain in the neck is the only way through.

@Chuntypops
Way to kick somene when they're down

Hope you're ok, OP- don't let nasty posters put you down, you sound lovely- your son is lucky to have you on his side

I can understand why longer term support has been recommended. Masking for so long will likely have depleted your son's reserves. His coping mechanisms have been effective in the short term but now the cracks are showing. He may have trouble accepting and celebrating the ways that he is different from his peers. That is going to be hard for you to do from afar assuming his university is not local. Plus he is at the stage of moving into independent adulthood. He might want to do this on his own far from family support or he might want to revisit and reevaluate his childhood, maybe moments of regression too. Whatever, it's big news for you all to get your heads around and rediscover him as an autistic family member. Hope it goes well.