Is it worth getting an autism diagnosis for my 16 year old son?

[LifeIn3Chords]

I’m hoping to hear from others who’ve been in a similar situation. My 16-year-old son shows a number of traits that align with autism — things like social difficulties, sensory sensitivities, and intense focus on specific interests. He’s very academic and does well at school, largely because he masks very effectively. Most people wouldn’t suspect he’s struggling.

But at home, it’s a different story. When he gets overwhelmed, he sometimes has meltdowns — not in an aggressive way, but emotionally. He gets very upset and keeps apologising like he’s done something terribly wrong just for feeling the way he does. It’s heartbreaking to watch.

He also really struggles to make and maintain friendships, even though he wants to connect. It’s affecting his confidence, and I think he often feels like he doesn’t fit in. He’s 16 but doesn’t go out with friends at weekends or anything like that. He hangs around with a group of boys at school and gets along with everyone - he doesn’t really seem to be able to form a stronger friendship though.

I’ve been wondering whether to explore a formal autism diagnosis, but I’m torn. He’s very resistant to the idea — he sees it as a negative label and worries it would change how people see him. At the same time, I’m wondering if it might actually help him understand himself better and give us access to more support.
If your teen was diagnosed around this age, did it help? If so, how? Is there anything other than the benefit of knowing himself that he has autism? He says he knows he does and doesn’t need a doctor to confirm it as it wouldn’t make an actual difference to his life. I just want to help him.

Thank you so much for taking the time to read this. Any insights would mean a lot right now.

My son off his own bat got an ADD diagnosis because he was struggling with revision and exams. He got extra time in exams which he said helped enormously.

I’m pleased to hear that was helpful @justasking111and well done to your son for getting it himself - that’s a big deal!

My DS has already said that he doesn’t want/need extra time in exams or to do them in a separate room etc - school work is the one thing that comes easily to him. It’s socially that he really struggles. I think he feels a diagnosis would just make the socialising thing worse at school? He wouldn’t want to tell people so would it change anything?

If you get the diagnosis there are some really very helpful books around which explain some of the effects that the different brain wiring can have from what society considers the 'norm'. This can be very helpful for him but also for the people closest to him; it can help explain why certain struggles occur and also give tips on how best to handle them, both for him and the people nearest him.

It can help make his life easier.

Honestly as well it can in some cases help the autistic and non-autistic people see just where the differences in social functioning are between the autistic brain and the non-autistic brain, which can give both tools to cope with the differences and frustrations in dealing with the opposite sort. Or to put it more clearly, a book of guidelines can help everyone cope with the challenges.

My son who is 12 is very like your description. My son has a lot of social anxiety when he is amongst his peers. Underpinning this, I feel, is a fear of not being liked. When he does something wrong or makes a bad choice he feels overwhelmed and continually apologises fearing that he has upset the other person even when minor actions were done.

I have taken him to be assessed for ADHD and Autism and he was found to have neither. He was a late speaker and I feel that this has had an effect on him socially. Highlight to me traits of autism’s language and social range. I took him to speech and language therapy sessions and they worked on the pragmatic side of language. The speech therapist said that she sees a lot of older teen boys who really struggle with the pragmatic and social linguistics.

For the last month, my son has been attending counselling CBT approach sessions to help his social anxiety. We all have noticed a huge difference in him, even his grandparents and teachers have too. These sessions, are having a dramatic effect on his negative behaviour patterns. Gone has the negative repetitive sorries. He is starting to show more confidence and engaging with his peers, especially in group work activities.

Recently, he has been talking about his friendship with another boy at school, something that he has never done before.

So it can be a positive and a negative. For me, I think it would depend on how much it impacts daily life.

Positive:
Helps a person to understand themselves

Can connect a person to a community

Gives a family a shared language to talk about things/ helps a family understand eg ‘Jane is not just refusing to do something- Jane is disregulated’

A diagnosis makes you eligible for accommodations and support in the workplace because Autism is a disability under the Equality Act as a protected characteristic.

It provides medical evidence to apply for PiP

Negatives: It can affect going to work in Australia (for a gap year type thing)/ make it more complicated)

It can put people off employing someone with a diagnosis (don’t come for me. I know it’s discrimination. I know it shouldn’t happen).

Possibly ADHD - it's worth knowing then you can read up on info about it and understand yourself better. I just heard on a podcast yesterday that ADHD people can relive in their minds embarrassing, upsetting, stressful moments (and beat themselves up about it) partly because reliving that awful moment gives you a burst of dopamine (which you are short of). Learn something new every day.

At 16, it is up to him. I wouldn’t push him into having one. Apart from extra time if he needs it, he won’t get any support with his level autism. There are quite a lot of children like him in school who have autistic traits but have not gone down the diagnosis route. I do think it is worth reading up on it so you can offer support at home.

Just bare in mind that he might not be diagnosed on the nhs because his difficulties arent enough to meet the criteria. I have a boy who was diagnosed age 4 who is disabled by autism and a girl like your son and although we know she is likely ND, the gp didn't entertain it because she does so well in school.

I got diagnosed as an adult, daughter very young. So can't give an exact opinion for your situation.

But having Autism during my early adulthood, I experienced burnout at points. The issue not having Autism diagnosed then, is that it was automatically assumed to be mental illness so I spent many years getting worse as I was being given a different treatment that they wouldn't of done for Autism as it can make things worse..so for that benefit I would say if any issues occurred at a later point, he wouldn't run the risk of time being wasted looking at the wrong thing if that makes sense.
The other benefit for me was being aware meant I could pretty much manage Independence better as I knew what the underlying causes were now for meltdowns. (Sensory issues) which before I would assume that it myst be xyz or im depressed again, then it would escalate as I wasn't minimising the actual cause (too much sensory input, overstimulation) being aware means I can nip it in the bud straight away.

Work wise, I know what adaptions work for me and I know which roles I can realistically thrive at. So from undiagnosed and unemployed being told I was sick...to diagnosed full-time employment and promoted doing my qualifications i didn't get an opportunity to do when I was younger.

So in my circumstance things are a lot easier!

If I was diagnosed as a teenager, I probably would not of spend 10 years in and out of a hospital, I probably would never of been given incorrect treatment and tbh it probably would of never got to that point. I probably would have accessed education and probably would never been unemployed for such a long time.

This all sounds very similar to my DD. She was 16 when GP referred her. I was always unsure of the benefit of having a label and worried a diagnosis might feel negative for DD.
She's actually found it positive though. I think it's made her feel like a lot of things make sense. School has been really supportive.
The thing I've found helpful is it makes it easier to explain some of the things that are challenging. It's like a shorthand. For instance, she has a very limited diet and is very anxious about being in situations where she's expected to eat something unfamiliar. People seem to be more understanding if she explains that she's autistic and has a restricted diet. And the school are more understanding if I say I'm worried about how she's coping because she's having meltdowns at home even though she's holding it together at school.
The diagnosis just seems to unlock a bit more support and empathy.
Having said all that, I do really understand why you're hesitant to go down this route.

I think if he is resistant to the idea then at sixteen that needs to be respected.

I'm sorry to say this op, but your son is in danger of burning out soon. He feels the need to mask all the time which is leading to meltdowns, it's a warning sign that it is not sustainable. Getting a diagnosis now may help him to learn to cut himself a little slack which could prevent a burnout or at least get him the correct help considerably faster if it does happen. He doesn't have to tell anyone he doesn't want to, not even the school.

I have only ever met one person who regretted getting their diagnosis and they had it scrubbed from their medical records, everyone else wished they'd had it sooner. Especially those who were diagnosed as adults.

He may or may not have autism. Don’t push him to get a diagnosis because either outcome will bring challenges.

At 16 it will be counterproductive to force your DS to go through the process. He needs to see a value in it; just knowing is not a good reason.

How would a diagnosis help him? It sounds like he is unlikely to qualify for any adjustments at school. There is no NHS support for social challenges.
And if he doesn’t have autism, he may feel he’s just weird. To be honest, this may be what he’s afraid of.

that’s the downside

But… he sounds really intelligent and thoughtful so take the time to let him engage with the information online and in books. You don’t need a formal diagnosis to start to use some of the techniques that work for people with autism.

Talk to him about his future. Once he leaves school, there is a value in having the diagnosis. People with autism can get reasonable adjustments in work eg quieter desk area. At university there is a lot of support including academic adjustments if helpful. So it is worth having a conversation about the value of going through the diagnostic process in the next few years if he wants to.

Sorry @LifeIn3Chords meant to add.

i completely understand where you are at. Been there with my son (diagnosed at 19).

something else that helped massively with the social issues (pre-diagnosis) was getting him into a team sports club with multiple training sessions a week. This has given him a social structure and outlet. It also helped with transition to university as he joined the sports club straight away so never feels lonely.

Thank you so much to everyone who has taken the time to reply. It seems there’s a real mixed bag of replies which echo all of my own thoughts!

It’s so difficult as a parent to navigate. As some have said, maybe he wouldn’t even get the diagnosis - school has never flagged anything to us, he’s never had behaviour issues or anything like that. He’s actually the opposite - he never breaks a rule or anything like that. I sometimes think that won’t help with the friendship thing - he’s quite “square” - does his homework and is polite to teachers and is not in the slightest bit cool.

I’m going to chat with him again today. I think I have to ultimately leave it up to him at this age but stress that we are here and will support him whatever he decides. I’ll let him know that we could look at some books as well, maybe it would be good for all of us to have a read of them.

@LifeIn3Chords

this website has useful information and this link has top tips on managing social interactions. These tips work well whether the person has autism or not eg with social anxiety or just old fashioned shyness.
https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships/making-friends/autistic-adults

focusing on strategies for the things that your son finds tricky right now regardless of diagnosis may be a good way to start.

good luck x