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Diagnosis seems hard

jellyrabbit

Hello. This is going to be a little bit rant-y, but I also have some questions. Sorry it's so long. 

I'm 21 and I've suspected I'm autistic for a few years now, and only recently found the need to try and get formally diagnosed. I know many don't see it as necessary, but for me I like to know things for sure are facts. Because of this and also how I am currently struggling at university, I thought now (although a bit late) was my tipping point and that I should reach out because I feel like I need further support.

I contacted my university's disability support team, because I know they offer support with diagnosis of other conditions like ADHD. They say on the website that they cover the costs, which was a benefit for me as I am of course a student, and unemployed. But they told me they can't refer me for an assessment for autism, and referral has to be done through my GP. So question one: Is this true? I don't plan on contesting them on it as I feel there's no point, but I know that when it comes to children they can be referred through their school's disability team/SENCO, so is this not the case with universities? Even if they can refer me for other types of assessments?

Since that was taken away as an option, I have been looking into getting into contact with my GP to see if they can get me a referral. Though I have heard horror stories of dismissal of autism in women and adults by GPs, as well as awful waiting lists (I fear I might end up graduating or dropping out of university before a potential diagnosis is finished Sweat), I do feel as I said earlier that the opportunity for a diagnosis would benefit me personally. I cannot afford a private diagnosis by any means. This leads into my second question, which might be a stupid question, but I can't seem to find anything about it online. If referred through the NHS with a GP, are there costs for getting assessed? I only ask because my university discussing them covering costs for assessments led me to believe there are costs involved, even when not being diagnosed privately. I have seen a couple of numbers (£350, £600? Things like this) floating around that are seemingly significantly lower than private costs, but the information is strangely written and very hidden, so I still don't fully understand if there are costs involved or not.

Thank you for taking the time to read Slight smile

Parents

  • The first paragraph could have been written by me. I'm your exact same age and just got diagnosed for the same reasons.

    Yes, universities can diagnose other conditions like ADHD and dyslexia but not autism unfortunately. So you need to talk to either your GP (to get referred through the NHS) or a private diagnosis service. If you get referred through your GP it will be free but depending on your area there might be very long waiting times (I was lucky, it was less than 1 year but in some places it's like 4 years). The cost of a private diagnosis varies a lot, I think the minimum is about £250 and it would be done within a couple of months rather than years.

    It's a lot, but it's worth seriously considering, because being on a waiting list can drive you a bit crazy if you're constantly questioning yourself. Peace of mind is valuable too. And if you want additional support from uni, it's no use being diagnosed after you graduate.

    Having said that, you might be able to get similar benefits in the mean time (rest breaks in exams, equipment for recording lectures, 1-1 support) from a different diagnosis e.g. anxiety or OCD, which are very common in autism.

    Don't worry about asking your GP. Mine was very helpful and didn't ask any difficult questions.

    Sorry that's long, I hope it's helpful.

  • in reply to BassFace

    I find it super interesting how many of us have similar experiences, it always makes me a little bit disappointed that for so many autistic people it's brushed off or not picked up on until much later. I'm glad you could get diagnosed though, congrats Slight smile

    Anyway, I appreciate the answers very much! It helped me a lot. think I will go to my GP and ask about getting a referral and hope the waiting lists aren't too bad.

    My university did give me the option to be assessed for traits of other specific learning disabilities through them, and said they could look for autistic traits at the same time which could still help accommodate my education. They said it wouldn't get me any closer to diagnosis though. I told them I'd keep it in mind as an option, so if the NHS waiting lists are too long I'll probably get back in contact about it so I can at least have a little bit more help because I know I'll need it (especially in my final year). I'd rather not go through more than one assessment process if it can be avoided, though, as the thought of it is very daunting. 

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  • in reply to BassFace

    I find it super interesting how many of us have similar experiences, it always makes me a little bit disappointed that for so many autistic people it's brushed off or not picked up on until much later. I'm glad you could get diagnosed though, congrats Slight smile

    Anyway, I appreciate the answers very much! It helped me a lot. think I will go to my GP and ask about getting a referral and hope the waiting lists aren't too bad.

    My university did give me the option to be assessed for traits of other specific learning disabilities through them, and said they could look for autistic traits at the same time which could still help accommodate my education. They said it wouldn't get me any closer to diagnosis though. I told them I'd keep it in mind as an option, so if the NHS waiting lists are too long I'll probably get back in contact about it so I can at least have a little bit more help because I know I'll need it (especially in my final year). I'd rather not go through more than one assessment process if it can be avoided, though, as the thought of it is very daunting. 

Children
  • in reply to jellyrabbit

    Yeah I completely agree it is disappointing that so many of us have this experience. For me and a lot of others, our autistic traits were noticed but we weren't assessed because we 'seemed to be doing well' at the time but that is pretty ignorant IMO, because a lot of us are very good at hiding difficulties and then things are not addressed and can get much worse. 

    BTW I found out the other day that my college covers the cost of private assessments. But I didn't know that so I needlessly waited 10 months to do my assessment for free through the NHS Weary However I think this is unusual, due to my uni having a college system.