Notes on Diagnosis & Assessment

Deciding whether to get a diagnosis of autism is a personal choice. 

For some autistics it’s important to have it on paper, to be “official” in some capacity. For others, it’s enough to “self-diagnose”. Chloe and Annette both have official diagnoses, but have come to consider themselves discovered autistics, not diagnosed, as the assessment and diagnosis are not based on medical assessment – no-one looks at our brain and determines a physical difference. Think of this akin to the exploration, discovery and acceptance of non-heterosexual sexuality: sexuality is not a pathology and coming out is not diagnosed – you just know. Autistic experience is not a pathology – there are no biological or genetic tests to determine that someone is autistic. And so, if after spending time exploring what it means to be autistic with fellow autistics leads to personal affiliation with those experiences then you are autistic – diagnosis or not (self-diagnosis is largely accepted within the autistic community, although there are a small minority within the larger community who adhere to the pathology paradigm who do not recognise self-diagnosis – something Annette and I disagree with).

To some extent, having a diagnosis can open up avenues of support you would not have otherwise had at university, such as mentoring, study skills tutor, Inclusive Learning Plans (e.g. extra time in exams etc.), software and hardware (e.g. Dragon Speaking & laptop for university work etc.).

It is possible to receive Disability Living Allowance from the government, although this is a on a case-by-case basis, i.e. not automatically awarded. 

The Process of Seeking and Receiving an Assessment

It is possible, and more likely that you will self-refer yourself for assessment (e.g. not have a parent refer you), and SYA? recommends asking both an NHS GP in your home town/outside of campus AS WELL as the university Student Support and Well-being department to put you on the waiting list for an assessment (dependent on your GP catchment area this may be up to two years wait, sometimes more).

Preparing to ask for a referral:

• Annette and Chloe recommend writing a journal/document that lists all the situations, experiences, feelings, behaviours etc. that you feel relate to being autistic. This can be quite a difficult thing to do if you try and decide what is autistic and what is not, so just writing about you, your experiences, and what you perhaps struggle with may be easier to do than thinking “what makes me autistic”? Take this to the GP/student support
• Do the online autistic quizzes, print, and take these to your GP/student support
• If you’re anxious, can you take a supportive person with you who can help you stay calm/talk for you (someone who accepts that your experiences are real)? 

NHS GP assessment: This may be up to a two-year or more wait for an assessment dependent on your postcode.  

Minuses to assessment via the NHS outside of university: 

• Be prepared that your average GP may not refer you if they are not use to seeing autistics who are not the stereotypical presentation (they may just see you as anxious/having anxiety disorder, or misdiagnose you with some other disorder) 
• The wait may be very long
• There is no guarantee that the assessor/assessment centre are used to seeing/assessing internal-type autistics, or those who are biologically female (e.g. autistics with a more internal experience, including masking, anxiety, social ability that is different to the typical presentation)

Tizard/Student Support and Well-being UoK: The wait may be slightly shorter for an assessment on campus, although the university has seen an increase in the number of students they are putting through, and their finances for the number of assessments they can do is limited per academic year. 

Pluses to assessment via the UoK/Tizard centre: 

• The university/Tizard centre are used to assessing and diagnosing internal-type, and biologically female autistics

By being on two waiting lists at once you can then cancel the assessment that you don’t need – and use the assessment that is first come, first served. 

The Assessment Process: 

The process actually differs dependent on which assessment centre you are referred to – even the NHS may refer you to different assessors with slightly different assessment methods. 

Chloe’s assessment with the Tizard centre (2017)  

“I had to provide a pre-screening document stating why I thought I was autistic. I had been compiling a document about my experiences already, so this wasn’t too difficult. 

I had to have two close family members/friends/partner to act as informants – people who know you well enough to be assessed separately. Typically this is a parent or parents, but I was 32 at the time and my dad died when I was 23, and it wasn’t possible for my mum so my ex-partner and best friend at the time were asked separately about me, which took them each a few hours.

On the day process for me was alone in a room with the assessor carrying out tasks and answering questions. There were some child-like tasks that felt silly for me to do, but they don’t really have suitable assessments for adults yet. I had to tell the story of a frog from a book with just pictures; tell the assessor what I would do if I were going on holiday; and they filmed the whole assessment. The assessor was nice, just felt patronising to do the odd child tasks!

I was told my interview wouldn’t take more than 45 minutes, which made no sense to me that I would be with them for a shorter amount of time compared to my informants. Consequently, I took nearly three hours – lots to tell them!

I waited about 2-3 weeks for my outcome and the written document. Apparently it took this long as they write up from the informants, my interview, and what the assessor thinks.” 

Diagnosed, male, student, 19 years at assessment (2017)

“The Diagnosis Process took about a year from when it was first suggested by my psychologist that I might be experiencing issues due to ASD as its new definition reflected many of my characteristics that ultimately led to [what] was at the time was seen as anxiety, depression and paranoia. This hypothesis led to an application for me to get a formal test performed and so a year and a bit later I took the DISCO [Diagnostic Interview for Social and Communication Disorders] assessment. This took about four hours with a psychologist, greatly assisted by my mum who was asked about my development while I was asked more about my experiences. Nothing was filmed. I was given the result on the day (that I am autistic) and received the formal letter a few months later (for use as medical evidence). My assessor was kind, patient and accommodating. “

Diagnosed, non-binary, student ? years at assessment (???)