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I need help with Autism and University

Abigail

I am currently on the waitlist to get a diagnosis for Autism and it is very nerve-racking because I don't know when I am going to receive a letter from the doctors or anything about it. At the same time as this, I am applying for university and I have had 2 offers (one conditional, one unconditional) and now I am completely confused about what I can do.

I have been thinking about applying for DSA (disabled student allowance) but I am not sure if I even can without a diagnosis and just being on the waitlist. I have the proof that I am on the waitlist with the letter from the NHS but I don't know if that would be enough to get it. Would it be worth going private to get a diagnosis so I can apply for DSA for university, otherwise I fear that by the time I have my diagnosis from the NHS I would have finished University already.

If I was to go privately, should I still stay on the NHS waitlist to get a diagnosis from them as well because I have heard that some organizations will only accept an NHS diagnosis for some reason (i think that is so stupid. What's the point of paying to go privately and potentially getting the diagnosis faster than you would have through the NHS if there are some places that won't accept it anyway. A diagnosis is still a diagnosis, NHS or not).

Or should I just not apply for DSA all together for the first year and make it less stressful because one of the universities has asked me to fill out an online form asking about support and stuff and one of the tick boxes is if I am applying for DSA and I haven't been able to send it off yet because I don't know if I am applying for it or not.

  • If you are at uni or have a confirmed place at uni approach the university disability services for advice. This it the kind of red tape they are very used to dealing with. They'll know all the ins and out of the system far better than us I expect.

  • Hi Abigail, I completely get where you're coming from as I was in the exact same position so I'm going to share what I did, it may not be suitable for you but it may give you some ideas. 

    Firstly, I'm in a gap year. There were many many reasons for this, covid, financial, life experience, but one of them was that it would give me time to wiggle my way through the waiting list. I was referred in December of 2020. I had a triage appointment in July 2021 where they decided to put me forward for full assessment. There was a conversation as part of this in which we discussed why I was seeking diagnosis now, again a myriad of reasons, including recently becoming an adult and being able to self refer to GP without school being involved, but one of them was getting support at Uni and getting a firm answer before uni. My two assessors agreed this made complete sense and made a note to try and ensure I was properly assessed within a year. I was told at assessment to call if I wasn't contacted by March for this reason, which already puts me in a lot more secure position than a lot of people on waiting lists, who have no such firm idea of when they might be assessed. 

    I applied last year for deferred offers, so I was applying for 2022 entrance. Not all degrees accept this, maths in particular has some issues with it, but a lot of unis actually prefer deferring, as students with some experience outside of school and who are a little bit older can do better. You can also ask your uni if you can defer after receiving an offer if you want to do so. Again a gap year is completely your choice but it worked for me in terms of getting that bit of extra time while awaiting assessment. 

    When it came to communicating with my uni I had the same issue you did. You can't apply for DSA without a diagnosis. You may be able to apply if you have associated conditions like severe anxiety or OCD and are being managed with your GP or mental health team for this. When the Uni asked me about needs I have so far said that I am 'awaiting full autism assessment post triage'. Of course the moment I have a full answer I will contact my uni and the Disability team to give them the new information and start discussing what accommodations I could get. I of course bought myself extra time by not yet going, but I'm sure there will be some form of help your unis, whichever you go to, for those awaiting assessment, especially as some don't even realise they could be autistic until uni. 

    I will quickly bring up an issue an autistic friend of mine had. When she went to uni, she was on the waiting list for our local adult autism centre. She, as recommended by most if not all unis, changed to a GP local to her uni. This took her out of her previous NHS locality and she was automatically removed from the waiting list without informed that it had happened. Two years after her triage appointment, she followed up and was told that she wasn't on their system any more. She had to move her GP back home in order to get an assessment, otherwise she would have had to start right from the beginning with her new GP. Once she did transfer back they got her assessed and diagnosed pretty quickly but it would have been really easy for her to never notice. So if you plan on moving away for uni, do talk to whichever autism service you've been referred to about how to manage that. 

    I wish you all the best with your other uni offers and hope you find something that works for you. 

  • My daughter had a private diagnosis and both the universities she has attended have accepted this, and made useful accommodations for her autism. Most clinicians offering private diagnoses also work for the NHS, so the origin of the money used to pay for their services should be immaterial. Always check that any private medical service provider is registered with the NHS and that the individual clinician is licensed by the General Medical Council and has the relevant qualifications, specialisms and memberships of clinical bodies.