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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

  • Hi,

    I’m in a similar position but a little bit older and struggling about 3 months into my first “proper” job. I also had thought I would never feel it necessary to have a diagnosis (I first thought about autism as a teenager but my parents were very “anti-labels” so I just parked it and decided to get on with my life as best I could). But now, I’m just not handling work (and colleagues) so well even though I really love my actual job. But I am also studying a Master’s, so will look up any information from my uni disability services to see if referrals for diagnosis are a thing they offer and let you know. So far in my searching I haven’t ever read anything like that.

    I would say go for it as waiting can only make it take longer. Having said that, I still haven’t gone to the GP myself as I feel scared to but not sure why.

    The other thing I think would be good is finding support anyway. Can you ask your university disability services about the kind of help they could offer you anyway, and explain what it is you’re struggling with? Also, have you looked to see if there are any autism support groups in your area? Lots of the ones I’ve seen in my area don’t require you to have a diagnosis to attend and it might be helpful to meet any talk to others with helpful experiences. And finally, there are some good books out there as well. I don’t know what exactly it is you’re struggling with but a book I’ve found really helpful so far (even though I’m only part way through it) is ‘The Guide to Good Mental Health on the Autism Spectrum.’ It has a good blend of theory about autism to help understand ways your brain might be working in certain situations, as well as practical tips to reduce negative mental health problems such as anxiety. Though I know, finding time for extra reading while studying at university is sometimes impossible (hence I’m only part way through this book).

    I hope some of this helps, and also that you’re able to find support before either graduating or dropping out. What are you studying, by the way? Relaxed️

Reply

  • Hi,

    I’m in a similar position but a little bit older and struggling about 3 months into my first “proper” job. I also had thought I would never feel it necessary to have a diagnosis (I first thought about autism as a teenager but my parents were very “anti-labels” so I just parked it and decided to get on with my life as best I could). But now, I’m just not handling work (and colleagues) so well even though I really love my actual job. But I am also studying a Master’s, so will look up any information from my uni disability services to see if referrals for diagnosis are a thing they offer and let you know. So far in my searching I haven’t ever read anything like that.

    I would say go for it as waiting can only make it take longer. Having said that, I still haven’t gone to the GP myself as I feel scared to but not sure why.

    The other thing I think would be good is finding support anyway. Can you ask your university disability services about the kind of help they could offer you anyway, and explain what it is you’re struggling with? Also, have you looked to see if there are any autism support groups in your area? Lots of the ones I’ve seen in my area don’t require you to have a diagnosis to attend and it might be helpful to meet any talk to others with helpful experiences. And finally, there are some good books out there as well. I don’t know what exactly it is you’re struggling with but a book I’ve found really helpful so far (even though I’m only part way through it) is ‘The Guide to Good Mental Health on the Autism Spectrum.’ It has a good blend of theory about autism to help understand ways your brain might be working in certain situations, as well as practical tips to reduce negative mental health problems such as anxiety. Though I know, finding time for extra reading while studying at university is sometimes impossible (hence I’m only part way through this book).

    I hope some of this helps, and also that you’re able to find support before either graduating or dropping out. What are you studying, by the way? Relaxed️

Children
  • in reply to Mearcstapa

    Hi! I wrote a reply to this yesterday but it got flagged as spam and I'm not sure if my appeal will work, so I'll try not to make this one as long and hope it stays up Sob

    Thank you for the response! Knowing other people are in very similar situations makes me feel less alone, and I can't imagine how hard it must be to be thrown into a proper job with no real support or accommodation so well done getting this far!

    You should definitely have a dig around on your university website and see if they offer diagnosis support. Even though mine wasn't particularly helpful how I wanted them to be, I have a friend whose university managed to refer him and get him diagnosed pretty quickly so it very much depends on the university and the amount of support they offer in the area. My university did suggest that I could get assessed through them to look for traits of specific learning disabilities (ADHD, dyslexia, etc) and they could look for traits of autism at the same time. However they told me this would not get me any closer to an autism diagnosis, just possibly help to accommodate some things in my learning. Personally, I find the thought of undergoing one assessment anxiety inducing enough (I also find it nerve racking to take myself to the GP Disappointed relieved) so I'd rather try to get a formal diagnosis and go from there when it comes to university support, fingers crossed waiting lists in my area aren't too extensive. Best case scenario is I can get diagnosed in time for me to get some accommodation when it comes to writing my dissertation in third year.

    I appreciate the book recommendation, and I will have a look into it to see if I feel it would help me Relaxed

    Also, I'm studying sociology! What about you?

  • in reply to Mearcstapa

    Thank you so much for this response, it makes me feel less alone to hear about people in very similar situations! I can't imagine how stressed I would be jumping into a proper job, so well done for even getting this far with no real support!Relaxed

    You should definitely reach out to your university's disability support team, or even check your university's website. Scour their disability section, I know things on mine were sometimes a bit hidden. Even though my university wasn't too helpful with what I was looking for, I have an autistic friend whose university was very accommodating and managed to get him through the diagnostic process very quickly, so depending on your university they could be quite useful. 

    For me, the team suggested that I could apply for an assessment where they look for traits of specific learning disabilities (ADHD, dyslexia, dyspraxia, etc) and during the assessment they could "look for autistic traits," which could help accommodate my education, but would not get me any closer to diagnosis. Personally I feel that having to undergo one assessment is anxiety inducing enough, so I'd rather just see if I can get diagnosed through my GP for now. I'm hoping if I get on it quick enough the waiting list will be short enough that I can at least get some extra accommodation during my dissertation once I'm in third year.

    I might have a look into the book you suggested and see if I feel it would be helpful, thank you for the suggestion! Right now I feel a little out of place looking into support groups even though I feel pretty confident in my 'self diagnosis' lol, but maybe some time in the future if I think it could help me to meet more autistic people. I live near a fairly big city, so I'm sure there's a few dotted around.


    Also, I'm studying sociology! Maybe a little ironic since part of autism is not understanding how (neurotypical) people work and sociology is the study of human social behaviour & interaction, but I find it pretty interesting for the most part even if it's very unrelatable Sweat smile What about you?