Today I had my needs assessment for Disabled Students Allowance. It’s 12 years since I first wondered if I might be autistic, a little over 2 years since an initial assessment indicated that I was autistic, and a year since this was confirmed by a full clinical assessment and diagnosis. I should have had plenty of time to think about what this means, but every now and then something happens which reminds me why I needed a formal diagnosis and why recognising myself as autistic and disabled, and being recognised as such by others, is important. Not just important to me, but also important to others with ‘hidden’ disabilities, including far too many children in schools whose needs are going unmet because they don’t ‘look disabled’.
All through my son’s primary school years, and it’s a similar story for many parents, his need for support was a constant battle, with school minimising need and me advocating on his behalf. The SEN system for children is largely adversarial and parents frequently talk and write of ‘fighting’ and ‘battling’ for support. Despite claims of collaboration and child-centred planning and support, the very need for a parallel system of ‘independent supporters’, to help and guide parents through the system, is indicative of a system not fit for purpose. To design a system for parents and young people to use which cannot be used without external help is utterly ridiculous.
(The same thing has happened with the introduction of Universal Credit. The system is so complicated that independent advice centres have been set up to help claimants through the system)
My first experience of asking for support was through work. After increasing struggles and meltdowns I was referred to an occupational health doctor. I had a very supportive manager who had already responded positively to my own requests but we were keen to find out if there was more that work could do. Despite requesting an assessor who had autism experience I was allocated to a doctor with a specialism in epidemiology. It was clear when I saw him that he had googled autism while I was waiting and had no clue about what might be helpful to me in the workplace. His reference to autism as a disease and his assumption that I had some sort of middle-aged onset autism didn’t fill me with confidence. He was unable to make any suggestions and his report merely recommended the few adjustments I could think of.
I had heard positive things about Disabled Student Allowance assessments and friends had commented how easy the process was in comparison to their experiences with schools and other government departments. Based on my previous experiences of accessing support for my son in school, for myself in the workplace, and many years supporting people to access benefits, housing and other welfare provision, I was skeptical and decided not to apply to prevent myself any extra added stresses!
In the summer I met with a disability advisor at my new university who recommended that I really should apply for DSA and he started the process for me. After a palaver getting a passport and nearly giving up at that stage, I sent in my identification documents and a copy of my diagnosis summary.
This was not enough. DSA needed more evidence:
“For an autistic spectrum disorder, please arrange for your doctor or other qualified medical professional to complete the enclosed disability evidence form. Alternatively you can provide any of the following documents:
- Statement of SEN and Transition Plans
- Individual Education Plans
- Learning Difficulty Assessments
- A letter from your doctor or medical professional which confirms the following information:
- a diagnosis of your condition
- your condition is long term (more than 12 months)
- how your condition has an adverse effect on your ability to carry out daily activities”
“Further to your letter I have sent a copy by post of the psychological report outlining my diagnosis of Autism Spectrum Disorder. The report refers to a further report which was largely history taking, is deeply personal and private, and which, therefore, I will not be sharing.
As I was not diagnosed until the age of 46, I do not have documents such as SSENs, IEPs, LDAs etc. Even if I did, they would be woefully out of date by now.
You ask for evidence to support that my “condition is long term”. Autism is recognised as a lifelong neurological condition and, as such, can never be transient. I am unable to provide specific evidence of it being a long-term condition, as this is implicit in the diagnosis.
I have not seen my GP about my diagnosis (or indeed seen my GP at all for the past 10 or so years) so he is not in a position to comment on how “[my] … condition has an adverse effect on … [my] … ability to carry out daily activities”. The diagnostic criteria is clear that to be diagnosed with autism: “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning” (DSM5 ASD criteria). As above, it is implicit in the diagnosis that there are significant ‘impairments’.”
And I waited.
At this stage I decided it was all too much hassle and I would be fine without DSA as I’d been fine with my previous studies.
Eventually I received a letter informing me that I was eligible for DSA and today I had my needs assessment.
My assessment was carried out by an organisation called ‘Contact Associates’ who provided excellent pre-assessment information with clear directions, details about parking (very important!) and how long the assessment would take. My assessment was conducted by a mental health specialist who demonstrated an excellent understanding of the range of support needs for autistic students.
I went into the assessment thinking I didn’t really have any support needs. It was only through my assessor’s careful exploration of how I study and finding all the little supports and adjustments I craft for myself, that I realised I do actually have some needs for support. It’s not that I can’t organise myself and produce academic work to a high standard. I clearly have and can, or I wouldn’t be embarking on a PhD! It’s that the effort and time it takes for me to do that is more than an ordinary, non-autistic, non-disabled, student would require. By adding in some human and technical supports I will hopefully be able to study more efficiently and more effectively without sacrificing all of my time and well-being.
What was most remarkable about the assessment, and in stark contrast to my experiences dealing with school support for a disabled child, was the sense that the assessor was an ally and an advocate, not an adversary. All too often schools and local authorities disbelieve and disregard professional opinion, because they can’t see ‘the problem’. We have to repeatedly explain our children’s difficulties and stress that just because you can’t see it doesn’t mean it’s not there.
But, having completed (not without much angst) the earlier paperwork evidence stage which proved my eligibility, todays assessment took that as given. I have a diagnosis. I have been officially assessed by an experienced professional to have met the criteria for that diagnosis. Attending an assessment where I did not have to again prove my disability, or list my deficits, or explain how despite being a reasonably competent adult I do struggle with a lot of things most ordinary people take in their stride, was liberating and empowering. My assessor felt like an advocate, not an adversary.
The DSA system for proving eligibility clearly needs some work, but without doubt, as a whole it is a vast improvement on the SEN system for children and young people.