It is ten years this year since The Autism Act 2009 was introduced. This week I am doing a series of blog posts about The Autism Act 2009 looking at what things were like before The Autism Act 2009 and what things are like ten years on. I am sharing from my own personal experiences as an autistic adult who received and adult autism diagnosis in 2015 and as a professional who has worked with autistic client’s since 1997 in a variety of settings. My experiences are all based on the local authority I live in, so I would be curious to discover whether others experiences from other local authorities is the same, worse or better.
The Autism Act 2009 guidance is divided into sections based on the 15 priorities outlined in the Think Autism Strategy, one of the sections is about identification and diagnosis of autism in adults and assessment of needs for relevant services.
In 2014 I was struggling in work with workplace discrimination. I was depressed and suicidal. As 2014 drew to a close I started thinking that the only way forward would be to see if I am autistic as I suspected, because if I was then my employer would have to get occupational health involved and would have to look at my needs and how to meet them, and if I wasn’t autistic, maybe I can get some idea of why I think and behave so different to others around me and what can be recommended to get the appropriate support in place.
I had worked with autistic people, from children to autistic adults since 1997, I had helped parents to seek diagnosis for their children, so I knew what I needed to do to get a referral for an autism assessment. despite The Autism Act 2009 my experience supporting families was that GP’s rarely seemed to know what they needed to do. Parent’s would visit their GP and explain why they think their child is autistic and that they would like an autism assessment referral, the GP would write a letter to the Child and Adolescent Mental Health Service (CAMHS), who would often promptly reject the letter. I would get told that it was because the letter didn’t show any evidence that the child might be autistic and there is already a long waiting list.
So, although GP’s should know about autism generally and about what would need to be in a letter when requesting a diagnosis, my experience was that this was rarely the case, they were sending letters stating a parent wanted an assessment for their child, but not making it clear why. I don’t know if this is due to a lake of training, or due to a lack of time, or both, but I went to see my GP knowing that if the GP didn’t write the reason’s why I maybe autistic then my referral may be rejected. I would expect a GP to know what questions to ask to gather the required information for the referral letter, but I went in with the information all written down to make sure I didn’t forget something I needed to say.
The GP asked me why I wanted an assessment but said he didn’t feel I needed an autism assessment, I just needed counselling because of being depressed. I said I wanted to have an assessment and didn’t feel he was the one to make the decision about whether I needed an assessment or not, just the one who should put the information in a letter to make the referral. While in the appointment with the GP I felt like I was being stupid, I felt frustrated, I was getting annoyed with the GP and their attitude which came across like ‘you’re not autistic, you are just struggling with work and need counselling for depression’. The GP agreed to make the referral but said it could be a few months before I hear anything. NICE best practices are that you should have the first appointment within three months, so I was expecting that it could take a while, and if it was a few months, this is better than it used to be, at least in relation to children’s assessments.
A few months later I had a letter from a counselling service. I contacted them and questioned whether they were doing the autism assessment because that seemed odd. They said they don’t know what I am talking about and that they have received a referral to say I wanted counselling for depression. I explained I wanted an autism assessment, I hadn’t asked for and didn’t feel I needed counselling at this stage. They gave me the telephone number to phone to talk to the relevant people about my autism referral. I contacted them and they said that no referral had been made. I booked an appointment to see a different GP. I explained everything to this GP and said I don’t want the same incompetence and treatment. I explained everything I had said to the previous GP, they made a referral and within a few months I was contacted by the autism assessment team and sent forms to complete and an assessment date. Within perhaps five minutes in the assessment with my mum, when she left the room, the therapist said I am definitely autistic. I wanted to know how she could tell so quickly, and then we got on with the rest of the assessment.
A month or so later I received photocopies (at my request) of my assessment forms that I had completed and shortly after that I received the official assessment. I was recommended to get an autism card from the National Autistic Society and to refer to the National Autistic Society website for information and resources etc, and it was felt I probably didn’t currently need further additional support as my wife is very supportive of me. I didn’t get any advice around benefits I may be entitled to (and have never sought advice around this), I never found out about any local support groups etc. I pretty much got the diagnosis and that was the end of it.
Unfortunately, it had taken so long by this point to get the diagnosis that I had lost my job and so had become self-employed. In my assessment the therapist had said I should take action against the discrimination I had faced in work now I know I am autistic and so they had been discriminating against an autistic person. I explained that I had lost my job and my concern would be that because my wife works I can’t claim benefits, and her income doesn’t cover the bills, so I need to just dive in to focusing on making an income so that we don’t become homeless, I can’t be focusing backwards on fighting people for discrimination who I no longer see.
One thing I did was because I had built up all of this focus and energy on seeking a diagnosis to address my work situation, that once I had the diagnosis I had nowhere for all of that energy and focus to go, so I wrote my autobiography ‘Look Into My Eyes’ to try to share what it is like to be autistic, both the strengths and challenges and what people can do to help autistic individuals and what autistic people can do to help themselves, trying to use my personal and professional experiences. Then my wife wrote a chapter from her perspective about being in a relationship with an autistic individual.
I felt at the time of going through the process I went through that if it wasn’t for all of my additional knowledge having worked within social care for many years that I wouldn’t have been assertive enough with the GP’s, that I wouldn’t have know what to do, I probably wouldn’t have known that I might be autistic, no-one around me, like work management would have been likely to identify and recommend that I seek a diagnosis. There was no clear, easy to find pathway, despite The Autism Act 2009 talking about a pathway to diagnosis and a post diagnosis pathway of some kind.
I didn’t know who the autism lead for West Sussex was when I thought about writing these blog posts so I Googled it (as I couldn’t find it by searching the local authority website). Back in January and up to the middle of February nothing came up, there was no information on the autism lead and not much information generally about autism. Then as I was refreshing my search (I leave tabs open on my browser for months at a time while I’m working on things) one day in early March suddenly a top search result appeared which was never there before which named the autism lead I had been searching for and the page it took me to had been last reviewed 20th February 2019, so either it was always available and for some reason it didn’t show in searches until now when it suddenly shows at the top of Google’s search results, or it was new and for some reason had been decided to add all of this new autism information shortly before autism awareness week 2019 on the tenth anniversary of The Autism Act 2009.
Prior to the last few weeks I had been unable to find any helpful autism information from the local authority about a pathway to diagnosis or post diagnosis support of any kind, now it is more clear.
I think, without greater awareness about autism in adults the identification isn’t really being met and, at least in 2015, it is still a challenge to seek diagnosis, not all GP’s are understanding and supportive of the idea of making a referral and they don’t necessarily know enough about autism to be able to ask the right questions to put the relevant information in the referral for an adult diagnosis.
It maybe that things have improved since I went through the process in 2015, or that things have improved in other areas, I would be curious to hear others experiences of seeking an adult autism diagnosis and whether this was easy and went smoothly and what you were made aware of in the way of post diagnosis services and support available. This is an area where I haven’t seen an improvement, I think it is a case of, most people around you won’t recognise you may be autistic as an explanation for struggles you are having, and it is hit-and-miss with GP’s whether they will take you seriously or dismiss you and whether they will know how to make an appropriate autism assessment referral.
I also have some autism books I have written about my experiences as an autistic person, my professional experience and knowledge and tips and strategies for autistic people, their friends, family, employers, teachers, etc – ‘Look Into My Eyes’ autobiography, ‘Asperger’s Syndrome: Tips & Strategies’ and ‘An Autistic Perspective: Death, Dying & Loss’. If you are interested, you can find out more about them here.