As mentioned a few months ago, what I decided I was going to do for autism awareness week 2019 was to take a look back at The Autism Act 2009. The act turns ten later in the year. I have been working professionally with autistic individuals since 1997 and received an autism diagnosis in 2015 following workplace discrimination which led to me experiencing depression and suicidal thoughts. It was being in this unpleasant state of mind which finally led me to seek diagnosis. Prior to this work colleagues over the years had mentioned about my similarity in the way I behaved to the client’s we worked with, some colleagues just commented on how I shared similar behaviours, others were more direct in telling me they thought I was autistic. I wasn’t blind to the similarities myself. I was aware that I did recognise myself in many people I supported, but I had a job and was content with my life and so didn’t even think about visiting a GP to seek a diagnosis, I didn’t see what a diagnosis would do for me.
One trait of mine is seeing people as individuals with individuality. I’m not really a fan of labelling people – this annoys some people when they listen to my sleep stories, because I will often refer to people or other animals as ‘they’ rather than assigning a gender and saying ‘he’ or ‘she’ because I don’t see this as relevant to the story. I try to give a gender now just because I know there are people who dislike hearing a story where there is no reference to the gender of the lead character, to their partner, or other characters etc.
In relation to autistic clients, I felt that the diagnosis was often unnecessary, you work with them as an individual with their own individual traits and needs. The diagnosis only seemed to serve a purpose in relation to meeting criteria for accessing certain services or funding, if the person didn’t need those services or funding then I couldn’t see why a diagnosis would be necessary. I could understand a diagnosis might help you know why you are different to others, if it is important for you (or perhaps for the parents) to know, but for everyday life, especially if you had a job and weren’t using any services, then I couldn’t see why you would seek a diagnosis.
So, I have been working with autistic client’s since before The Autism Act 2009 came in. Initially the autistic people I worked with were in care homes, so they already had a diagnosis and an assigned social worker, the client’s weren’t exclusively autistic, they had various needs which led to them being in the homes, but a large percentage of them were. Then in 2007 I started working for the local authority supporting parents to reduce anti-social behaviour and youth offending of their children and teens. Again, not all of the children and teens were autistic, but many were and a good percentage of those didn’t have a diagnosis but had parents trying to get diagnosis.
This was before The Autism Act 2009, here in West Sussex at the time parents could easily end up waiting 18 months to 3 years to get an autism assessment for their child or teen. It was common for children to be managed in primary school and it was often identified that they needed some more support than others, but the extent of this required support wasn’t often recognised until the child entered secondary school. Initially there would be talk that maybe they are just having trouble settling in, so the first couple of terms very little was done, then meetings would start taking place to look at the child’s needs as they were still struggling, in many cases the meetings were focused on how the child was displaying challenging behaviour of some kind, then the first year would end and they would hope things improve by year 8 (second year of secondary school), but when they don’t eventually the parent would be encouraged to perhaps seek an autism diagnosis for their child. Professionals often struggled to know how to tell parents that perhaps their child was autistic, although in other cases it was the parent ‘fighting’ the school saying that they think their child is autistic.
Eventually the parent would visit the GP about their child, usually this would result in the GP making a referral to the relevant service (Child and Adolescent Mental Health Service (CAMHS) or Child Development Centre (CDC)), but the referrals were often poorly written and so would get rejected without a specialist ever talking with the parents or meeting the child. Then by the time they eventually do get on the waiting list they had to wait perhaps up to three years for the assessment by which time the child was continuing to deteriorate at school and those who I met were now getting into anti-social behaviour and youth crime and wouldn’t be diagnosed until they should have completed their GCSE’s, some would be on part-time timetables, others excluded or in Alternative Provision Colleges (what were Pupil Referral Units). Many left school with few qualifications and struggling to know what to do next, struggling with how they would transition to work and struggling with meeting criteria to get into college and were now ‘known’ by the police and anti-social behaviour teams as being trouble makers. Some parents by this point had given up hope, they had fought for years to get their child support and now felt it was too late. I had parents who would say to me that their goal now was to just endure the time left until they turn 16/18 (depending on the parent) when the child will have to move out.
This was a very frustrating time. There was no Autism Act. My experience as a practitioner was that there was a lack of awareness of autism among professionals, a lack of awareness of what to do to help autistic people (diagnosed or not), GP’s didn’t seem to know enough in relation to autism, they would make inadequate referrals which would get rejected without the person being referred or their carers ever being met. There were very long waiting lists and no clear or easy to find information on what services were available to support autistic individuals or their families, or what people should do if they think themselves or someone else is autistic. Even working within the caring profession with families I struggled to find helpful information for the families I was working with.
The Autism Act 2009 was the first (and still may be the only?) condition-specific legislation. The question’s are whether it has made a difference and if so, what difference, and what is needed next?
Over the next week I will share my thoughts on some of the content of The Autism Act 2009 about changes I have seen professionally over the years since what I have shared above based on before the act was introduced through to now ten years on, as well as my personal experiences seeking an adult diagnosis and being an undiagnosed and then diagnosed adult and my experiences with adult education and employment.
Most of what I talk about will be from my own perspective and experiences within the local authority that I live in. I don’t know if my experiences are reflective of experiences in other areas, so I would be interested to read in the comments of my posts over the next week what your experiences are compared to mine. I will also share ideas about what I think is needed going forward.
In a very unscientific poll I did on Twitter 38% of people felt that things have improved since The Autism Act 2009, 50% said things have stayed the same and 12% said things have got worse.
What are your thoughts on how the impact of The Autism Act 2009? Have you noticed a difference? Is there an improvement, have things stayed the same or got worse?
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.