Thoughts on support without diagnosis?

Hello, I'm in 2nd year of a 3 year course. I disclosed autism and ADHD to my uni's disability service 3-4 months ago. I don't have diagnoses for these, and the fact is I won't be able to get these before the end of my course. My disability advisor gave me reasonable accommodations for ADHD as a specific learning difficulty only, and I am really dissatisfied with their support because they gave no help in implementing any of it.

I also suspect that I have other conditions: Tourettes Syndrome, Complex Post Traumatic Stress Disorder, Anxiety and Depression.

In my most recent term, I was in autistic burnout. I missed several classes and, with 4-5 essays a week, I wasn't able to keep up with all of it. I couldn't attend any lectures. I'm worried I'm not going to catch up and my final grade is going to suffer, through no fault of my own.

When I spoke to one disability advisor about this, I was gaslit into accepting no help. I had disclosed autism to them, so surely this is discrimination? I'm not reassured that they are going to be understanding.

I've written up a list of reasonable accommodations that I hope will actually help , but I'm unsure if they will accept these without diagnoses. I've explained that the process to getting diagnoses -- waiting lists aside -- is inaccessible because my GP enforces phone calls for appointments and haven't understood how depression and c-PTSD manifest in me because I'm autistic. Does anyone have any experience getting support without diagnoses?

Hey there. I was in a situation last year when I started my first course where I didn't have any diagnosis. Before I go into everything, I will say that I am now diagnosed formally with autism, social anxiety disorder, AFRID and depression.

From experience and my friends, it's so difficult because each Uni works completely differently. My university were so amazing to me but they were also very blunt about what they could and could not offer. So they gave me deadline extensions, smaller exam venues, the option to tell tutors, and an attendance waver. However what I really needed was study support. They admitted that it was a funding issue and they could only do so much because DSA was supposed to do the rest. Some universities don't even accept self-diagnosis. Personally, I appreciated their honesty to me and they've been amazing in that regard. But everything is SO much more difficult without a diagnosis, it's horrible.

Sadly the option that helped me would be a lot harder for you because of what you described. Gps can diagnose social anxiety and write you a letter for it (though I charged me for it, it was worth it) because I was able to get DSA. That DSA gave me a councillor, assistive software. However, I had to struggle through first year without study support, which I'll now be getting next year. So that was a half-route for me.

My friend was more in your boat. She can't go to the dp because of her anxiety so she didn't have that option like I did. She ended up seeking a councillor from the University, who was able to provide her with more help than the disability adviser. They emailed her tutors with her permission to let them know the situation. Is this something your university has?

While I was waiting to be diagnosed, I was in contact with our student disability network who we all just shared our experiences. I tried some support groups to help with the anxiety, they didn't help me much but my friend still goes to them today.

Another option is if you have a tutor that you really trust to tell? I asked for a meeting (well I'm not going to lie, I asked my friend to write the email) with the head of my course. We sat down and I told him about my problems and the issues with waiting list. In my case, he was understanding and we have a support system where I can let someone know if I can't attend class and need work sent to me.

Have you asked your disability adviser if the uni offer any assessment for different disorders? My friend does quite a few for things like ADHD and dyslexia. Mine only did screenings, not assessments, but some do.

I'm so sorry if that was all just ramble, sometimes I don't know when to stop and I just want to help. The list is great and there will be some things they should hopefully meet, normally ones that don't cost them money is the case. Feel free to tell me if what I said is useless or wrong and I can try to explain it or change anything

Hey, thank you for taking the time to respond. So I got an educational assessment for ADHD, funded by the disability service, which allowed me to get a study tutor. And that's great! They have helped a lot. I have tried the counselling service at my university and unfortunately it didn't work for me . It is hard because everybody has different needs, but without allowing for self-diagnosis, it becomes much harder! My problem is that the course structure is really tight and overwhelming, and I struggle with self-advocacy. I didn't know that I struggled with this when I first contacted my disability advisor. I've told them this now, so hopefully their support will be better. Having thought about this, I think I'm going to contact a tutor who I trust about this. That wasn't a ramble, you've helped me process some of this.

Hello, I'm in 2nd year of a 3 year course. I disclosed autism and ADHD to my uni's disability service 3-4 months ago. I don't have diagnoses for these, and the fact is I won't be able to get these before the end of my course. My disability advisor gave me reasonable accommodations for ADHD as a specific learning difficulty only, and I am really dissatisfied with their support because they gave no help in implementing any of it.

I also suspect that I have other conditions: Tourettes Syndrome, Complex Post Traumatic Stress Disorder, Anxiety and Depression.

In my most recent term, I was in autistic burnout. I missed several classes and, with 4-5 essays a week, I wasn't able to keep up with all of it. I couldn't attend any lectures. I'm worried I'm not going to catch up and my final grade is going to suffer, through no fault of my own.

When I spoke to one disability advisor about this, I was gaslit into accepting no help. I had disclosed autism to them, so surely this is discrimination? I'm not reassured that they are going to be understanding.

I've written up a list of reasonable accommodations that I hope will actually help , but I'm unsure if they will accept these without diagnoses. I've explained that the process to getting diagnoses -- waiting lists aside -- is inaccessible because my GP enforces phone calls for appointments and haven't understood how depression and c-PTSD manifest in me because I'm autistic. Does anyone have any experience getting support without diagnoses?

To get any kind of substantial disability support, you need a medical diagnosis of these conditions. If people could get support just from self-diagnosis alone, there'd be very little support or resources available for people who have actually been diagnosed, so it's not practical or reasonable to expect full disability support. It may still be worth providing accommodations to see if they can and will implement them, but I wouldn't get your hopes up.

Hey, thank you for taking the time to respond. So I got an educational assessment for ADHD, funded by the disability service, which allowed me to get a study tutor. And that's great! They have helped a lot. I have tried the counselling service at my university and unfortunately it didn't work for me . It is hard because everybody has different needs, but without allowing for self-diagnosis, it becomes much harder! My problem is that the course structure is really tight and overwhelming, and I struggle with self-advocacy. I didn't know that I struggled with this when I first contacted my disability advisor. I've told them this now, so hopefully their support will be better. Having thought about this, I think I'm going to contact a tutor who I trust about this. That wasn't a ramble, you've helped me process some of this.

Hi,
When you got a funded ADHD assessment have you had it yet ?
If so did you get a diagnosis and have they made any adjustments
or have you not had the assessment yet or not got the diagnosis

I've had it. It wasn't a 'proper' ADHD diagnosis, just the psychologist noted 'signs of ADHD', so no? To be honest, I have no idea what they meant. I know I have ADHD anyway, and it was a means to an end to receive some support from my disability service, so I didn't care about the details.

The disability advisor made certain adjustments, including extra time (25%), regular breaks, and use of a word processor in exams. Does that answer your question?

Hello, thanks for your response Practically, I think you are right that disability support services at universities might not have the resources to support the actual number of autistic people who exist (I speak about autistic people particularly because this is what I know about). However, the problem with that is that the resources are lacking, not the lack of medical approval. In my opinion, universities accepting self-diagnoses for disability support would not disadvantage diagnosed folks if the resources were there, and it is reasonable to think that self-diagnosed people deserve support. Unfortunately, I was aware in writing my original point that, the fact of the matter is, disability support for neurodivergence is gatekeeped by medicine, so practically I am doing all I can do. Thanks again for your reply!

The resources are there, just for diagnosed folks. That is all they want from people to get the help they need. Self-diagnosed people can still get some support, but to expect the full level of support provided for disabled people is unreasonable. I don't believe medicine is gatekeeping anyone or any health condition. If you feel your medical provider is doing that to you, then you can put in a complaint. Otherwise, it's usually a case of getting referred by your GP to the right people and being assessed.

The resources are there, just for diagnosed folks. That is all they want from people to get the help they need. Self-diagnosed people can still get some support, but to expect the full level of support provided for disabled people is unreasonable. I don't believe medicine is gatekeeping anyone or any health condition. If you feel your medical provider is doing that to you, then you can put in a complaint. Otherwise, it's usually a case of getting referred by your GP to the right people and being assessed.

To be realistic it is completely appropriate that they require a diagnosis to access support, unfortunately there are people that would take advantage of accommodations such as extensions etc by claiming they have a certain diagnosis (not insinuating this is applicable to you OP). To safeguard against this University Disability services require a formal medical diagnosis as they only have so much funding to go around and need to ensure it is going to the right place.

I have BPD and it takes a long time to access a psychiatrist to get diagnosed with that on the NHS. My GP suspected I had something more complex than anxiety and depression but they gave me a 'holding' diagnosis of anxiety and depression while I waited for my referral. This meant I could access DSA and support while I was waiting to see the psychiatrist. This could be something you could discuss with a GP as it would allow you to access some support whilst on a waitlist.

Aside from long waiting lists I don't really see why someone would hold onto a self diagnosis instead of seeking one from a medical professional. I completely understand minors or people who live at home but ultimately university is somewhere you can be independent and this also means taking control of your own health. If you are struggling with anxiety there has been a large increase in things like telephone or video appointments that would help break the ice if you didn't feel comfortable attending in person initially. There are GPs who are dismissive but you have to keep requesting new ones until you find one that listens to you and will refer you to the right place.

You also need to think long term beyond university, having a diagnosis will allow you to access reasonable accommodations in your workplace with HR.

And the resources are there for the self-identified people, or at least they should be! I think yours is a naive view. 'All they want' is actually a big ask. Current research indicates that the barriers to diagnosis include intersectionality and the role of 'masking' for autistic people (Pearson and Rose, 2023). It is suggested that the process of receiving a diagnosis, by being referred by a GP down to the assessment itself, excludes people who have the condition from being recognised.

This is why I disagree that undiminished support for self-identified people is not reasonable. Furthermore, the legal definition of disability only requires there to be an 'impairment that has a substantial or long-term adverse effect on carrying out normal day-to-day activities' (paraphrase, Equality Act, 2010). Medical diagnosis is not mentioned. I'm not sure, then, why diagnosis is required by universities. Do you know?

Finally, self-identified autistic/ADHD and/or ND people are disabled (or deserve that label, for not all identify with it).

I totally get your annoyance with the system that's why it took me 12 years to get diagnosied due to the school system and the way the referral works
However, I would say in recent times there has been a lot of improvement in recognising masking and screening at younger ages which I know they still need to improve more and that won't help you but they are still positive changes that hopefully show that the future of the diagnosis will become more accessible

I'm just guessing but anyone could say that they have an impairment that has a substantial or long-term adverse effect on carrying out normal day-to-day activities and it could be just taking advantage of the system (not what you are doing) so I'm assuming that the diagnosis is required to make sure people aren't making it up

I'm assuming that the reason behind the diagnosis at uni is that some people would take advantage of the system and get extended deadlines and exam adjustments when they don't need them which does make it hard for the ones who truly need them without a diagnosis but it's probably the best way to stop people lying about it

I'm not sure if this is true for all universities but for people with a diagnosis there is limited support that they can give unless the student has DSA which provides funding and is controlled by the government as then you are eligible for more adjustments

You said you had a physiatrist appointment and letter about the ADHD traits have you sent this to DSA as they might be able to give you extra support

And the resources are there for the self-identified people, or at least they should be! I think yours is a naive view. 'All they want' is actually a big ask. Current research indicates that the barriers to diagnosis include intersectionality and the role of 'masking' for autistic people (Pearson and Rose, 2023). It is suggested that the process of receiving a diagnosis, by being referred by a GP down to the assessment itself, excludes people who have the condition from being recognised.

This is why I disagree that undiminished support for self-identified people is not reasonable. Furthermore, the legal definition of disability only requires there to be an 'impairment that has a substantial or long-term adverse effect on carrying out normal day-to-day activities' (paraphrase, Equality Act, 2010). Medical diagnosis is not mentioned. I'm not sure, then, why diagnosis is required by universities. Do you know?

Finally, self-identified autistic/ADHD and/or ND people are disabled (or deserve that label, for not all identify with it).

I'm not saying diagnosis is easy to get and that's not what I'm focusing on in my comments. I'm saying that disability support has always been, and always will be, there for people who have been diagnosed, whether it's easy or hard to get said diagnosis.

You say you were 'gaslit into receiving no help', which suggests they offered you help but you felt like they weren't being accepting so you didn't accept it. My uni still supported me and accepted what I told them when I started my degree, even though I didn't apply for DSA about two years into my degree. Before DSA, they still put my health conditions (with no proof) on my records and made adjustments for me, so there are adjustments and support there, but if you want further support offered by something like DSA, its requirement is proof of diagnosis which isn't ludicrous to expect.

Ok, I'm not saying it's easy to get a diagnosis either. It's true that disability support has been for diagnosed people, what I'm saying is that I think it shouldn't be. We can disagree on that, though.

I will try and clarify what I meant about gaslighting. I meant that the disability advisor said something along the lines of "You don't look autistic, therefore we won't support you with that but will give you some adjustments for ADHD instead". I did accept these ADHD adjustments; they will be helpful for my exams. What I was/am angry and annoyed about is that, in my opinion, the disability advisor didn't know enough about autism to know what I needed, and at that time I didn't know either. I've talked before here about being solution-focused rather than fixating on my potentially unhelpful but still valid emotions. I am capable of managing them! For this, I am not talking about DSA. If you said that they put your health conditions on the record and provided adjustments with no proof, they are not doing that for me. I am having to work hard to 'prove' that I am autistic.

I too don't think it's ludicrous to expect proof of diagnosis for a government financial payout for neurodiverse conditions either (I wasn't saying that), given the current legislation. That is a fact. However, now you've brought it up, I do think that there should be more awareness by people for whom's job it is to support students in getting DSA that for high-masking autistic students, like me, it is difficult to be believed about their disability. (By the way, I don't mean that autistic == neurodivergent).