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Is it worth me seeking a formal diagnosis?

NAS85297

Hey everyone

I'm a 17 yr old who will be 18 relatively soon. Looking at the resources about autism, I've come to the conclusion that I am quite probably autistic. Once I came to this conclusion, I decided to inform my parents for advice on what the next steps I should take are. They had a very negative reaction to this and discouraged me to pursue it any further. They insist that I cannot have it, but their reasoning doesn't make sense.

I don't think what I have negatively affects my progress at school / in exams but I do believe it to cause some trouble getting round to preparing for exams. I will be in university in some time, but I have no clue whether I will need additional support.

I made the decision to pursue a formal diagnosis myself once I am 18 without doing a lot of research into what this would mean for me, and this is what I had in mind for a while. However recently, I have done some more looking into it and found some awful reports about the treatment of diagnosed autistic people (i.e. migration, legal and medical autonomy, adoption, etc) and I am no longer sure whether it is worth seeking this diagnosis without much certainty to whether it will assist me in life in getting support I may need. It feels like it would've been more worth it had I figured this out earlier, but now I am afraid of the downsides.

Based on the limited info I've given, do you think it is worth continuing to pursue a diagnosis? I'm sorry if this whole post is vague or not what this forum is for. I just need some other perspectives.

  • This is definitely what this forum is for so don't worry!  Your parents might understandably not know much about autism and may have an idea in their heads of what an autistic person looks which might not be like you.  I don't have a diagnosis and haven't even managed to get on the waiting list yet, but I would recommend trying to get an assessment based on what I do know. I have struggled through many university courses over my lifetime and if I had a diagnosis and had asked for help it might have been easier.

    As for the horror stories, they may be the extreme cases so unless you are a migrant looking to be adopted you may not need to worry but I can't truly comment as I don't have a diagnosis.

    Others who have gone through diagnosis might be able to give you more advice. What I do know is that there are lots of people on this forum much older than you are who wish they had known they were autistic at your age which would support the argument for asking for an assessment when you can.

  • I would recommend that you get a diagnosis. You may not have had many issues at school and with exams, but university is very different from the structured environment of school. At university you have to make your own structures and manage your own time. With a diagnosis, you would be able to access additional support. You may not need that support, but you won't know whether you do until you are there.

    My 19 year old son was diagnosed as autistic last week. He was fine at school, got very good A levels, but has struggled at university before taking a year out to re-assess. He found it difficult to structure his time and had difficulty doing assessments due to problems organising himself and understanding what was required due to the lack of detailed instructions about the task. If he goes back after his year off, with a diagnosis, he will have access to the support that might have helped him through the start of his degree.

    There are downsides to getting a diagnosis, society has improved in its acceptance of autistic people, but there is still a way to go. However, with a diagnosis, you will have better self knowledge and be able to make more informed decisions for yourself. You can choose who you share your diagnosis with. If you do go to university, choose a subject that you are passionate about, rather than one you just like. That passion will motivate you to overcome any issues that you meet in the process.

  • At age 52 myself and having had my own diagnosis in 2021 just after Covid, having been encouraged by family back home in Ireland since 2019 to have it here in the U.K. where I’ve lived for just over 20 years, given that you are age 18 soon, it reminds me of my own teenage years in the 1980’s when I had thought I was gay and first came out in an Ireland that was much more Catholic than it is now and it strikes me that being gay and being autistic are similar in many respects, in terms of the challenges faced and indeed, many LGBT’s are autistic as I’ve read online - it does concern me that after my diagnosis, most of the post-diagnostic support available appears to be geared towards children rather than adults and I do recommend the directory on this website as a starting point for your search for support - I suspect that your parents are somewhat aware of this apparent lack of adult post-diagnostic support and are therefore reluctant to put you into a similar position to myself