DS (18) has self-diagnosed himself as autistic

[User3459876295]

I'd be grateful if anyone can advise on this please. I'm a regular using a NC to protect DS privacy.

DS has told his dad that he thinks he is autistic. I think he has gone down this road because he feels that he doesn't "get" social interactions and is struggling with that. He's also then fastened on to the fact that he's very quick with numbers and systems (he barely ever drops a mark in A Level Maths) and has a phenomenal memory for certain types of information such as flags (don't know if anyone saw the ridiculous flag round on University Challenge but that's the sort of thing he does for fun). I don't know whether someone has said something to him but he's done some online tests and apparently his score indicates that he may be autistic.

I don't think he is but I am really not an expert. None of his teachers have ever raised this as a possibility. I do recognise that he is awkward in social situations but have put this down to lack of confidence especially after Covid has curtailed his social life.

There are lots of reasons why I think he's got this wrong, but I know they're based on my own, inexpert and probably wrong, understanding of autism. Reading this www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/autism-spectrum-disorder-asd#characteristics-of-autism he ticks some boxes but I imagine many people do.

He's obviously been mulling over this for a while and I don't want to dismiss it. My experiences of work and friendship with autistic people suggests to me that DS has got this wrong - his brain doesn't seem to be wired like theirs are. But I recognise that I am very far from being an expert and need to recognise that he may be right.

Can anyone recommend what I can do next? There are so many online tests but none of them seem very reliable.

I have read of many people diagnosed as an adult, and from recollection, it would have been reassuring to them and helped them manage their neurodiversity had they known earlier.

Could your GP practice offer advice as to how a test could happen?

I think your assumptions about what autism looks like are a bit narrow. Your comments about how "their brains are wired" worry me, since you can't possibly know very much about what that actually means - particularly since your understanding seems to be coming from a few personal relationships with autistic people and some cursory online reading. From your description, it's more than possible that your son has autism.

I'd keep your scepticism to yourself, if I were you. It's likely to complicate your relationship with your son, if this is something he feels strongly about and intends to pursue.

Sounds like its a reasonable conclusion hes jumped to, but fortunately it sounds like hes the sort of person that will be fine. Some of us are really disabled being autistic and others are fortunate enough to get very into things that can make a living etc.
Good for him. Does he want to pursue a formal diagnosis?

Online quizzes aren't really going to give you a clear answer. The Autism Society website has some information about the referral process that you and your son might find helpful.

@Greensleeves I'm really sorry if my wording was crass. I tried to explain in my post that I recognise how little I know about autism. I definitely want to support him in whatever steps he takes next.

@Branleuse, yes I think he does want to pursue a diagnosis although I haven't been able to talk it over with him yet so only have his dad's account to go on. As he's about to leave school I wasn't sure where to go as a next step but @balalake's suggestion of the GP is of course the obvious one which I should have thought of!

I’m confused by that nhs article. Talk of assigned male or female at birth is really complicating the issue. It boils down to autism in males being more obvious then autism in girls who can mimic social interactions and therefore mask the autism

Autism is a triad of impairments. The national autistic society is an excellent starting point for

Of the online test yourself screeners the AQ is good quality and predictive of a future diagnosis
It's from s baron Cohen and I would suggest it to your sub, he could do it to help GP decide if he should be referred for assessment

Depends on what he wants to do and why, I'd sit down and discuss that first. Then depending on the answer there would be various options. Some I can think of:

if he wants to pursue a diagnosis, I'd make an appointment for him to discuss the possibility he's Autistic with a professional who has the relevant qualifications and experience to test teens/adults. Not straight into a diagnosis, discussing if it's a possibility. Where I live once teens hit 16 it becomes a lot harder to find the relevant specialists, most work solely with under 16s.

If he wants to just explore the idea initially Id suggest he finds a group on FB where he can listen and see if he feels like ASD fits. There are many groups on FB for Autistic people and as long as he's willing to listen and respect others, the ones I'm in have so much knowledge and you can learn a lot simply by reading and listening. The ones I'm in are very accepting of those who identify as Autistic as they realise that not everyone can or wants to access a formal diagnosis, especially if you realise later in life it can be prohibitively expensive and too much.

There's lots of literature out there too, much written by experts, but I'd focus on those written by Autistic people. I've focused on books aimed at young children so couldn't recommend any in particular, but I know there's relevant literature out there that could help him explore whether he could be Autistic.

If it's pretty much just the social issues he's identifying with then something like social anxiety might be a better fit. I thick a few boxes, but they're all ones that can also be anxiety driven. I actually think unlike my Autistic DC that I might have ADHD, but the inattentive type. Intelligence can mask Autism and ADHD. Girls especially can take longer to get diagnosed because of masking and non typical presentation especially if they're twice exceptional, that's gifted and Autistic here. He could have a non typical presentation, it's more common with girls but not impossible with a boy. Talk to him about what he wants and needs from this then you can make decisions going forward based around what he needs.

Thank you all so much for the helpful and useful advice.

My DS15 has an ASD diagnosis, you can do a self referral to CAMHS for an assessment - but be warned there is a long wait. You can also get him assessed privately but this might cost about £1500+ depending on whether they class him as an adult.

It depends what you or your son wants to get from this, if he’s coping at school then I would not worry as teachers would have flagged it up.

you can do a self referral to CAMHS for an assessment

OP's Ds is 18. In most areas, CAMHS stop at 18. It would have to be an adult service.

he’s coping at school then I would not worry as teachers would have flagged it up.

My Ds has an autism diagnosis and we have always been told he's fine in school. He's never been anywhere close to fine. So much so, he now attends a specialist college.

My DH got his diagnosis as an adult age 29, he was referred by his GP and put on a 3 year waiting list. The time passed and he eventually received a letter inviting him for his appointment. He was also invited to bring along a parent or someone who could discuss what he was like as a child, so DH took his mum along. It took a few hours but he came away with a diagnosis the same day. I think you should be supportive of him if he wants to pursue a diagnosis and suggest he asks the gp to be referred

Presumably he's heading to Uni? If he flags it when he accepts a place at Uni, they'll assess him. It will be very useful, helping him identify strengths and areas where he'd need some support. They may well allocate him a support worker/mentor to see at intervals to discuss how he's getting on.

He may have autistic traits, or full blown autism, or dyspraxia- often there's a lot of overlap. An assessment will show.

My dd has recently been diagnosed at the age of 18. She went through the GP who referred her to a psychiatrist who then referred her for an assessment. It has taken quite a few months to go through all the processes so the quicker you start the quicker you find out for sure

if he thinks this then i think it should be diagnosed by a professional. anyone can stick a label on themselves using an online quiz . I'm sure if i did it id tick a few .dosent mean iv got it though. it seems to be the fashion to be getting diagnosed with autism .sen .personality disorders and god knows what else

@chaosrabbitland

if he thinks this then i think it should be diagnosed by a professional. anyone can stick a label on themselves using an online quiz . I'm sure if i did it id tick a few .dosent mean iv got it though. it seems to be the fashion to be getting diagnosed with autism .sen .personality disorders and god knows what else

This. I would encourage him to seek a professional assessment. The self diagnosed autistic community (it's a thing) are bloody dangerous. I hope he hasn't got himself into any of these ridiculous Facebook groups. If he genuinely does think he may be autistic then he should be looking for confirmation. If he is just jumping on a stupid bandwagon of self diagnosed pish then you need to help him get down. I think the first step for you to help would be to listen to his reasoning and reading as much as you can from legitimate sources.

I got my diagnosis at 42. I "don't look or behave like" the image that often comes to mind with the preconceived idea of autism, but actually my ADOS scores were pretty damned high above the thresholds for diagnosis when it came to it (and I thought I masked pretty damned well - that was deflating!).

My diagnosis is very recent - but it threw into perspective an entire life where I'd just assumed I was some kind of reverse King Midas where everything I touched had gone to shit and I'd screwed everything up consistently - now I look back and understand WHY I didn't fit socially or I misread a situation that snowballed - in a game of social interaction Chess, I'm working with the boot and iron from a Monopoly set instead. I'm also currently near the end of training in a profession that deals a LOT with ASD - and my current placement clinician, who is an autism specialist, has expressed amazement at how positive getting the diagnosis has been for me and that it seems to have been a real turning point (I got diagnosed in the middle of the placement).

Your son will probably be fine in life whatever - he sounds very like DH who has really found his professional niche and has a good solid career - but DH is also very honest with himself and us that he's pretty confident he's got neurodiverse wiring as well, but doesn't see any need to go further down the path than that - for me, I needed to know.

Sorry I'm a bit Randy but the 'self diagnosis' thing angers me somewhat.

Randy

Ducking hell, I'm definitely not Randy - I was being RANTY

'Thinking you are autistic' is presumably a pretty normal first step toward assessment?
After all, if you didn't think there was something, you would never put yourself up for an assessment for autism.

Unless you are diagnosed as a child, before you've had time to think about it, then I'd think everyone going for an assessment has thought they were autistic. Some of them will have been wrong. Most of them will have been right.

Whatever you don't dismiss it, because when I was a teenager and early 20's I thought I was autistic, turns out it was ADHD, but it wasn't diagnosed until I was 36, meaning I really struggled with life and nearly ended my life, before my diagnosis.

If he strongly thinks he has autism, start the ball rolling for an assessment. If he is 18 he can ask via right to choose for an assessment. Research the different providers, and he needs to go to his GP armed with evidence.

On the flipside, prepare him for the possibility that he hasn't got autism, and help him with navigating things that he feels he has issues with.

@picklemewalnuts

'Thinking you are autistic' is presumably a pretty normal first step toward assessment? After all, if you didn't think there was something, you would never put yourself up for an assessment for autism.

Unless you are diagnosed as a child, before you've had time to think about it, then I'd think everyone going for an assessment has thought they were autistic. Some of them will have been wrong. Most of them will have been right.

Thinking you might be autistic? Fine.

Self diagnosing as autistic? Not ok.

Thank you again everyone. @CoffeeWithCheese your post was very moving, the idea of having been given a slightly different set of life tools to everyone else but not knowing it so not being able to make the most of them :( I'm glad it has been such a positive thing for you.

At the same time, I work with young people and am aware of their (understandable) need to look for labels and explanations for why they are struggling, because their lives are bloody difficult right now. And the dangers that can go with that.

You've all pointed me to some useful resources and mentioned some important things which I need to think about. He is a brilliant kid and we just want him to take this forward in whatever way is going to help him.

I hope I don't get flamed for this, but could social media be influencing this?
I've recently found myself losing hours to tiktok and there is so so soooooo many posts of people posting what its like as an adult having autism or ADHD. The videos are all (that I have seen) been lighted hearted but I feel most of us can relate to. I even briefly questioned if I may be autistic. It'll be things like opening a drawer to say get batteries, but finding something else and getting distracted and before you know so much time has been and you haven't finished what you originally started. Preferring to have a routine or have plans in advance rather play it by ear. Being an introvert or shy etc.

My brother who introduced me to tiktok has now for a month or so been saying how he is convinced he is on the spectrum. He also self diagnosed and now refers to himself as being on the spectrum. He now points out stuff that could be related - such as his lack of social abilities etc. I really don't think he is autistic but the more convinced he is, the more it seems his behaviours are changing to fit the profile.

I would suggest your DS Contacts his GP and asks for a Referral for an autism assessment. The GP will ask him why he thinks he may be autistic.

I'm in my 50s and my GP referred me a few months ago. I was triaged by somebody (a nurse?) in a specialist service and she agreed with the GP and put me in the list for a full assessment.