Pros and cons of getting an autism assessment

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DN aged 18 is quite clearly autistic, but doesn't have a diagnosis. So on the one hand he doesn't like to say he's autistic or identify as such because he doesn't have a diagnosis, but on the other, he's reluctant to get a diagnosis because he doesn't want the label, or it being in his records, having to tell an employer, etc.

I don't understand enough to have this discussion and I worry I might advise something that he'll live to regret. I feel that a diagnosis is important, especially as he's a high achiever and has already experienced burnout.

I'd love to hear some opinions, and whether you think he's right to worry about this? Thanks!

It might be helpful to him. My DH is very successful in his career but has always hidden the fact he is dyslexic. He’s finally (at nearly 40) confided in his manager and now he has extra support for the areas he struggles with. It’s all been pretty informal and basically it’s allowed him to perform his role better.

Your DN won’t be obliged to disclose it, so can pick and chose when they can use their diagnose to help them and withhold if they think it will hinder.

He doesn’t have to tell anyone he doesn’t want to. Employer has no right to know. Might be quite helpful to have in his back pocket for further education in case he later needs support.

I manage a team member with several different diagnoses and additional requirements for support. It’s not impacted her progress in anyway, if anything it has helped as, as well as the business allowing me to offer all appropriate support, she has funding from other pots to support her home working in a wider way too.

As far as I can see it has only been to her benefit to have a diagnosis as it means she has all the support she needs to succeed

DD1's SENCo recommended we get her assessed when she was at the end of Y6. We finally got her ASC diagnosis through at the beginning of Y11.

It was helpful from a school perspective, as she got additional support in the classroom and 'time outs' and extra time in her GCSE exams (she can get very anxious) but beyond that I'm not sure whether it's benefitted her or not. I thought it might help her to understand herself a bit better, as she sometimes didn't understand why she did certain things. But now she seems to want to disown her diagnosis.

I personally feel that the follow-up support isn't there. So you get the diagnosis and then just some 'useful links' in an email.

I work in IT security and it’s practically a prerequisite. My employer has a programme for recruiting people with an asd diagnosis.

There are no cons. He can choose who he tells.

Thank you all. But if this is in your medical records and then you have to fill a form that asks if you have any disabilities and you don't want to tell, doesn't it make things tricky?

i wouldnt think about any cons

I would go for the diagnosis. Excuse my clumsy wording here, but I think it's a protected characteristic meaning he cannot be discriminated against for being autistic. So say it impacts his later life, like further study or work - there would be the potential for him to request support to help him without it being something he could be discriminated against.

@S00LA

If you have a diagnosis and don't disclose, it can then be difficult. Dsd has not disclosed in the past fearing discrimination at the interview stage then reasonable adjustments were refused as the application process clearly (I saw after the fact) asked for disclosure so they could assess additional adjustments required and compatibility with the role. There was physical issues too here

My DD17 was diagnosed 2 months ago.Super academic.Its already been very positive for her.She was exhausted having to mask so much and now school know so she can take time out/, she can unmask at home/ we are more understanding of how it is for her. Her small circle of friends knowing means she feels she can be herself.For us it was her going to uni next year.It was a relief to do the open days and see that the students who showed her around/did the presentation for the course she wants to do were just like her and only there for the study not the social stuff (niche course...very academic).I can't see any cons.

Cons are you have to tell health insurance, travel insurance etc. It hasn't actually put up our premiums but there must be potential there. It also meant we had less points to emigrate to some countries when we looked. The military dont have a blanket ban anymore but you do need to have questions about it to see how it impacts you. The doctor rang us during covid to say a DNR had been put on our son and did we want to change it.

Pros at 18 are you can better understand how to support yourself, you can have confidence to request reasonable adjustments and you can use the diagnoses report as evidence if you need to claim PIP, you may be able to access support groups, it is very useful if you do any higher or further education.

If he doesn't need or want adjustments then there's no reason he'd need to declare it anyway. It can be private if he wants that. The wording is usually around any disabilities that will effect the work or you'd need adjustments for.

How's his mental health? It helped my DD to know the reason she felt difficult was because she is ND. Shes been aware of being different since she was 5, it's an internal feeling she had but didn't understand why. Having a name, a reason, understanding herself better has been really positive for her. I know the not knowing has been tough for a lot of the people who didn't get diagnosed as kids and are now seeking a diagnosis I their 30s or 40s. If he has struggles in the future with burn out or decides to do further education it could be useful to get support or adjustments. It opens up another community to him with support and understanding if he wants to be part of that. My DD has a good group of friends at school, but she also loves hanging out with a group of non school friends who are all ND kids, ADHD or ASD or both. They understand each other and I think she finds it good to be somewhere with less social pressure. The world is built for people who are NT, it can be exhausting just being out in that world. Hence the burn out. Some ND kids hut burn out at university and never make it through. If he gets burnt out and needs to take some time out it may allow him to qualify for other benefits. The assessment process is very slow, can be 2+ years, so if he waits until he's struggling or burnt out he's not going to get a diagnosis to get support in place at university or work when needed.

The doctor rang us during covid to say a DNR had been put on our son and did we want to change it

WTF?

DD got her diagnosis last year, she was just 16. She refused for a year to be assessed but I think the therapy she had for anxiety (and where the ASD suspision was raised) helped her to see behind the label.

She struggled with masking and it really freed her. First, she now has a name to put why she is different and secondly, she has the right to ask for adjustments. It made 6th form easier and when we spoke to universities, they also bring up lots of help.
She has currently therapy to help her going through what exactly it means and how she can rely to society around her.

We were lucky, the private health insurance via my work funded the assessment and it was all over in a matter of 8 months.

Yes, the idea to disclose it to work is a bit frightening but she spoke to a friend who is a lawyer specialised in HR. The friend has 2 ND team members and explained how their firm adjusts and also that just because HR and her boss know it, it doesn't mean it's published everywhere else.
Flexi-work approach actually makes lots of adjustments easier.

I'd say a diagnosis is helpful. It explained why I was the way I am and I could look into it a bit more. It has also helped at work with reasonable adjustments. Plus, people can't argue with a formal diagnosis.

Cons - as a masking woman who got to 35 before realising I might be, I think several people don't believe me and that hurts, but that might not be the case here and dn's presentation may be more 'obvious/typical'.

There's really not a lot out of after-diagnosis support for adults, just a few website links. I paid for counselling to work through it.

Why would there be cons?

It's always better to know, and you don't have to provide doctor details for it to go in your medical record.

It would be a barrier to moving to Australia or New Zealand and possibly other countries if that is something he would ever be interested in.

High functioning autism?

Don't they ever need too flight engineers, specialists of any kind?

I think a lot of people just wouldn't disclose. If you don't consider it medical or disabling, you wouldn't.

That's ripe for legal challenge, anyhow.

If you have a diagnosis, don’t disclose it at interview when asked and then ask for adjustments once you are hired then yes, that might be difficult. But the problem has been created by the applicant and their timing , not by having a Diagnosis.

They could have chosen to disclose at the right time or not at all.

Having issues that need accommodations in some jobs won’t just go away because you don’t have a diagnosis.