Past, Present and Future -

The titular “Wee Room” is a safe haven at the bottom of our garden where friends gather, music is played, books are read and ideas flow. It certainly saved my sanity during lockdown, it was a place I could go, watch the birds, be close to nature and to just be.

 

Past, Present and Future.

As someone who has always worked, starting with a Saturday job in Woolworths (sadly, no longer on our high streets), and then summer jobs, the most memorable being a stint in Butlins (don’t ask), the decision to retire early hasn’t been taken lightly, but it has been taken.

I hope you will share this transition with me through a series of blogs as I contemplate the past, wax lyrical about the present, and look to the future and the different ways I might continue to make a contribution.

I didn’t set out to work with autistic people. I had a few false starts to my career but always worked with people who would be considered marginalised or different in some way or who the system termed “challenging” when they were, in fact, challenged by the system.

As a support worker to deaf/blind individuals, I was certainly challenged to step into a world that was totally foreign to me. To try to understand and support the communication and other needs of people with minimal or no vision and hearing was a steep learning curve. So many of the lessons I learned remain with me particularly as I reflect on practice that seemed so pioneering that I am embarrassed about now.

1990 saw me start to work with autistic people and their families. The social care landscape was changing in Scotland with a move from huge institutions and learning disability hospitals to community care. At this stage this was mainly to smaller institutions, undoubtedly an improvement for many people but still, not the way most people want to live. Limited privacy and personal space, structured days, set mealtimes and worst of all from my perspective, no choice in the other people you were living with.

In the coming months and blogs, I will pick out some high and low points, as I see them, from the social care sector. I have remained working with, and on behalf of autistic people and their families for the last 33 years. It’s for others to judge the impact of that, and I am sure they will. However, looking back, it sometimes feels everything has changed and nothing has changed.

Our understanding of autism over that time has increased to an incredible degree. I recall going for my interview with The Scottish Society for Autistic Children (now Scottish Autism). I went to my local library and asked if they had any books on autism, after a considerable wait, the librarian returned with one book. As I recall, it was about a school that was heralding the great achievements they had made in changing the behaviour of “challenging” pupils. Their methods now, and probably then too, seemed to me extremely questionable and certainly well within the behaviourist paradigm. I have, for many years now, rejected behaviourism in favour of relational practice. I admire those who were ahead of their time but in the 90s, it was the prevalent ideology. It takes time, reflection, and the opportunity to learn to challenge paradigms that are baked into the systems in which we work. I, of course, welcome the progress we have made in the wide range of autism and autistic literature that is now widely available and that has been so influential in challenging and changing my practice.

One of the major things that hasn’t changed is the lack of societal understanding and, the at times, awful experiences autistic people and their families have had. I have lost count of the times my heart has cracked at the disgraceful injustices people face. I can only imagine the trauma and damage the cumulative effect the failings that are endemic in our systems and services have had and continue to have on people.

This last couple of years I, and others have been campaigning to tackle the systemic barriers that persist. The most high profile of these efforts is our ongoing campaign for legislation that would see, amongst other things , a Commissioner for autistic people. The commitment given by the Scottish Government is broader than autism and includes people with Learning Disability and other Neurodivergent groups. It has, at times, been a very difficult space to work in. There is undoubtedly a great deal of support for the concept but there has been opposition, and that is to be expected, we are unlikely to get consensus when such a diverse community is involved. In the absence of consensus, leadership is required. I can only hope that leadership will be shown and that, whatever the shape of the legislation, that it meets the needs of the many thousands of autistic people across Scotland.

 What we do have consensus on is, the disadvantage autistic people face in education, health, social supports, and employment. On almost every measure autistic people fare worse than non-autistic people, not because of anything that is inherent about being autistic, but because we are operating in a system that is stuck in outdated thinking and knowledge of autism and that has not shifted to a more contemporary view.

 Siloed and if not resistant, certainly slow to change, I have heard time and again of the frustrations of people let down by the very services they turned to rightly expecting to find help and support. When the language of war is used in the context of a parent seeking an education for their child, this must surely be an indicator of failure? Parents should not have to “fight” or “battle” for something that is a universal right.

So, to the future. I am retiring from Scottish Autism in October. As that well known philosopher, Kenny Rodgers says, “you have to know when to hold them and know when to fold them”. I will dedicate some time to reflecting on this in later blogs, suffice for now to say, it is definitely time for me to, metaphorically, fold them.

I know myself well enough to know that a hard stop would not be an option. So, I am planning to work in a way that is completely different for me. My ideas are not yet fully formed but I am pretty certain that Butlins won’t be featuring. Then again, never say never.