Published on 12, July, 2020
I am very frustrated and anxious and am wondering if anyone has any advice.
First off, I was referred for an autism assessment with the adult team pretty much as soon as I turned 18. I was actually referred first when I was 17 but due to waiting times I was rejected from the paediatric services and adult serviced don't accept referrals until you're actually 18. I also took a gap year and have a very early birthday so we're coming up to my two year anniversary of waiting, yay, I'm going to bake a cake to commemorate it.
July 2021 I had a triage appointment and was referred for full assessment. At that triage appointment I was told it would probably be by March and that they thought it was really important that I had a diagnosis before I went to uni. During that year I was given a social prescriber due to MH issues, who then proceeded to try and get me assessed by the MH team as I began to get worse and lose control. The MH team said that they thought my issues were due to autism, so I needed specialist support, but I can't get that without diagnosis, so I have to wait for the autism assessment (which at the time was thought to be a few months away) and they'll give me another assessment in a couple of months.
It was then March, and I hadn't heard anything, so I emailed the assessment centre. They now said that waiting lists were at least a year from triage (for a period of time they had literally no staff members able to do the family member interview, so no assessments got done and they got a massive backlog which they're now trying to clear) but that they thought they should be able to do it before I go to uni but couldn't promise.
I get another MH assessment. Once again, it's probably autism, not our area, we can't do anything, you may be at risk if you don't set up support with uni, discharged with a forward plan of 'access IAPT (which are ironically difficult to access. Only by a phone call from the person, which I am incapable of doing as phone calls are awful for me, especially initiating unplanned ones, and they have thus far ignored my social prescriber's referral) and await assessment'. In the meantime I contact uni saying I'm awaiting assessment but I don't know if it will be completed in time. They ask me to keep them updated.
Finally, a couple of weeks ago. My mother, in the middle of dealing with my younger brother's assessment stuff too, decided she wanted to get an update from my autism assessment centre, and she can do phone calls, so I cuddled the dog on the floor while she rang them so I was around to give my consent for her to advocate for me and correct her when she got stuff wrong. New fun news, not only will my assessment definitely happen before going to uni, and no, there's no way to expedite it, and even if it was, it still wouldn't happen before October (if that's quicker than normal, I'm alarmed about how long it'll take). Oh and I'll only get a maximum of two weeks notice and it will be in person so I am going to have to sort out that absence and journey quickly if it happens in term time. Not good for someone very reliant on pre-planning.
So, it's taking a while. And I knew it would. What I didn't know is that I would have the end point moved every time I enquired. I get that they can't be sure all the time, but currently I'm estimating an extension of at least 9-10 months from what original data I was given, and that's being optimistic. I've also discovered that my area's autism support centre, the same people to be assessing me, don't accept private diagnosis and require you to be reassessed in at least some capacity by them, so that isn't an option either. -insert frustrated scream here-
I would have had a completely different plan of action around accessing support if I known that there was no chance of a diagnosis before uni. I wouldn't have spent 12 months thinking that I'd be able to access autism specialist support and so I just needed to hold on until then for a start.
Because I'm still waiting for this diagnosis, I also can't change GP to my university area. Which means while I'm at uni my support will be limited to any support the uni gives me, and crisis services. The local MH services here are progressively moving back away from online video conference or phone appointments, so getting help that way may be very difficult.
Now to the uni bit. My uni has been pretty good in that they haven't been outwardly hostile although they're certainly reluctant to give any information. They have said that they'd like to do a meeting in early September about it with their autism advisor to 'discuss options for support that may be available to you at the University while you await an assessment'. That sounds potentially very beneficial. I'd obviously prefer it happens earlier (I'm very much a planner) but it'll be 2/3 weeks before term starts, so that's something.
Now for the help bit. I have no idea what I might be able to ask for at uni. As I've said, they've been extremely tight lipped on giving any information. Their websites (yes, plural) are a nightmare to navigate but having spent a year periodically browsing them I'm finding more information every time but there has been absolutely no examples of the non DSA funded help they can provide. Does anyone who has experience going to uni know anything that would be good to ask for? Or anything I should be aware of? I can't be the only person who is/has been in this position.
Sorry for the very long post. Thanks for any advice you can give
We just emailed our GP surgery & they sent us a copy of the referral letter , the university asked for this as evidence too to support my daughter while awaiting diagnosis.
That's interesting to know. How did you access the original GP referral letter? I certainly never received a copy, only a copy of acceptance/rejection from adult services/CAMHS respectively
we emailed the original referral letter from our GP & student finance emailed us a form 'Disabled Student's Allowance Disability Evidence Form' which we filled out & our GP filled some sections too.
The fact that they literally stopped doing any assessments, and stopped accepting referrals for a number of months, once during the pandemic and then later also stopped doing final assessments for a number of months and yet they do not accept you having gone private is so infuriating and stupid. They're not giving me care which they themselves acknowledge isn't good enough, but won't accept me going down any other avenue instead.
Thank you for your response. I get a personal tutor and a director of studies. One for pastoral stuff, one for academic stuff, I will definitely talk to my personal tutor about this.
Thank you for the response.
I didn't know that you could get DSA pre-diagnosis, most things I've seen say that you have to have a final assessment report. What evidence were you able to use instead?
Might depend on what they've got in house. What I find frustrating about the NHS, is that they precluding you from helping yourself to get by other means what they cannot provide. I know that quality of assessment is variable out there, but you would think that they could provide a list of providers who meet the standards and whose assessments they would accept as though one of their own. You can't expect not to be in a position to help people and then not allow them to help themselves. Bonkers!
My daughter is currently waiting to be diagnosed with Autism & have been advised it may take 2/3 years on the waiting list. She tried to go to University last September & lasted 3 days as it became to overwhelming so on returning home we went to our GP for an Autism referral. She has taken a year out & we have been in contact with Durham University disability support who have been so supportive, we have had a few Zoom calls & visited the University too, they also run an Autism induction programme so the students can move in a few days earlier than everyone else so they have time to adjust before it gets too busy & said they will put extra support in place this October if we were still waiting to be diagnosed & weren't able to get DSA while on the waiting list. They advised us to apply for DSA at the same time as applying for Student finance this year as they except some people who are on the waiting list to be diagnosed as they are aware there is such a backlog on the waiting lists. It was very straight forward Student finance give you some examples of evidence to support your DSA claim & if they approve it they give you a list of centres in your area to make an appointment with who then help you to do the claim . Within contacting student finance & getting the DSA approved it took about 3 weeks, she has been given funding for a mentor & extra study support so many hours each week, she has also got a laptop & various other devices to help her with her studies as recommended by the centre who assessed her. Hopefully this October with all the extra support in place she will settle at University.
You will almost certainly have a personal tutor and s/he will be your first point of contact. Be open and explain your concerns, but remember that your tutor may not be autism aware and may need to have things explained. Your tutor will probably be the person who authorises things like late submission of assignments. There will also be a Student Wellbeing or Learning Support service - it differs according to the uni what it is called and how it works, if you are not sure ask at the Students Union.
It is up to you whether you "come out" as neurodivergent to your fellow students and lecturers - I guess it comes down to how much you trust them. Once you have told the university that you have a disability they might share that in confidence with some lecturers in order to make "reasonable adjustments" under the Equality Act. This might be relevant if you have a lecture room with flickering lights, noisy aircon etc. and your lecturer may be able to ask to get it fixed or to move to a different room.
You will probably find that loads of students and staff are neurodivergent, whether they share that information or not.
Enjoy your time at university!
They haven't suggested as such, and I know the NHS doesn't accept uni ADHD diagnosis so I doubt they would accept ASC diagnosis given how fussy they are about who does it.
I've never heard of a uni actually assessing someone for autism, only encouraging people to seek assessment
Good Lord! I feel for you! The system real is broken.
Can the University assess you themselves? Sometimes they have clinical psychologists who are qualified.
Not very helpful of them, sorry I don't know what else to suggest.
Thank you for your answer, I agree, no matter how reasoned or placed out they can still just ignore me.
Everything to my uni has been in writing because email is my favoured form of communication, I struggle to make phone calls so it is extremely unlikely I will every do an unplanned phone call
The DRC is the equivalent of a pastoral care team in this area. I went to the other version and they just referred me back to the DRC. I have emailed them multiple times but they don't answer any questions in this area, a 'meeting in early September' is the most certain thing I've gotten from them.
As University is such a significant aspect of personal development its best to continue to go gently and keep communicating your request in writing or begin that writing. If no matter what you do nothing alters then perhaps its best to look directly at study priorities only There can be a gamble factor related to where your awareness ends up being expended if such support will just not materialise, & effort / irony around it. If after repeated requests theres still no progress, then something is surely not right yes, but will it ever materialise ?. Similar inertia always existed to a degree around things getting done around peoples special needs. But right now things seem hang in limbo like never before. When in a critical developmental position such as during university study, it might be essential that whilst your requests are compelling, they be by implication passive. It is just not worth being distracted.
That way the support will either come forth sooner or later or will not, while ensure precious concentration is not expended is important being such a contrary effect. If you are putting your case coherently in writing to the pastoral team there should be a reasoned response. But the other outcome can happen for no apparent reason.
Best to put your ability to shuck off any disappointment at the centre ? - whilst wait see how they respond to your reasoned communication concerning how you'd feel vulnerable without it. Counter intuitive slightly in a 'i would be vulnerable / i will not be vulnerable way.
Can depend on how clear we are with respect to ourselves & personal/emotional awareness strategy.
Have you tried asking the pastoral care team at the uni? they may be able to tell you what they can do or suggest things that other people have asked for. Simple things are more time in exams, advance notice of questions if appropriate, gettting them to re-phrase questions you don't understand