Alice Running is an Autistic author and mother of Autistic children from the U.K.. She writes and blogs about social justice, the Autistic experience, inclusivity, and elevating Autistic voices. This week she shared her experience as a late-diagnosed adult creating a safe environment for her Autistic children.
You were diagnosed Autistic after the diagnoses of your children. What was that process like? Did you seek diagnosis based on your own curiosity or were you urged by others?
It took thirteen years for my eldest son to be assessed and diagnosed as autistic because his school didn’t equate his presentation with autism. So I spent an awful lot of time researching autism in order to persuade professionals that he warranted an assessment and support. During those years of research, I recognised many indicators that were applicable to me and my childhood. After going through the research, assessment, and diagnostic process a second time for my youngest son, I knew that I was also autistic and so began to identify as being autistic with close friends and family.
For many years I was content with self-identification and didn’t feel it was necessary to gain an “official” diagnosis – as a lone parent I was working full-time at trying to have my children’s needs recognised and supported, which left little time to focus on myself. Through conversations with other autistic women (who were also mothers to autistic children), I became aware that it might not be such a good idea to be openly identifying as autistic with professionals involved in my children’s care – there was a worry (within the autism community) that professionals may consider being autistic a barrier to good parenting. Unfortunately for me, professionals had begun to notice that I got overwhelmed in education meetings and shutdown in order to cope with this. Those same professionals questioned whether I was mentally “stable” and questioned whether I was a risk to my children. At that juncture, I felt that I had little choice but to undertake an autism assessment for myself in order to allay their concerns for my mental health.
My assessment was a very positive experience as I chose to be assessed by a diagnostic service that views autism as a positive cognitive ability. When I received my diagnosis, I was congratulated, and my diagnostic report focused on my strengths and abilities, alongside highlighting potential areas for support.
I’m still coming to an understanding as to what being autistic means for me. I have a little more support and understanding from professionals now that I have a diagnosis, and certainly feel more respected. There are still a handful of autism professionals who either doubt my diagnosis or view it as negative, but I feel that being autistic myself gives me some understanding of what life is like for my children.
You’ve advocated for setting up an autism-friendly home (despite “expert” advice that might warn about the ‘bubble’ effect). What does an autism-friendly home look like for your family?
I place a lot of trust in my children knowing and recognising when life has become too overwhelming or too challenging for them. They may communicate this in a number of ways, but when they are communicating that they have reached (what I call) “peak saturation,” I give them the space to rest and recuperate. I only make demands of them when they are capable of meeting those demands. Pushing an overwhelmed, autistic child because adults want more just leads to shutdown or meltdown, and that isn’t beneficial for anyone.
I am also a big advocate of adapting the home in order to make a safe space which allows for adequate rest and recuperation. No one can rest properly if there is a perpetual something that triggers sensory discomfort. For my family, this means plain decoration, minimising strong smells, having quiet spaces, having spaces to bounce, and having a plethora of fiddle toys. All of these things help us to self-regulate, so we can then function better within the often, chaotic outside world.
Obviously individual needs and interests vary, but do you have any general advice or resources for other families trying to set up an autism-friendly home or school?
Take the time to fully understand the sensory needs of the autistic person you are supporting. Each autistic person will have specific sensory needs – they might need to move around a lot, they might find certain noises painful, they might not be able to tolerate certain smells. Supporting sensory needs correctly has such a positive impact upon our holistic wellbeing, which benefits all areas of our lives. This may not always mean restricting or reducing specific stimuli, it may also require increasing some stimuli or having certain stimuli readily available in order to provide comfort.
One of your recent blog posts revealed how you’ve experienced bullying as an adult and how there is a lack of support services to address hate bullying. What do you think is the most important first step to addressing adult bullying? What should allies be doing to help with this?
Bullying and hate towards autistic people is a really complex area. I feel that some parts of society and culture are becoming increasingly toxic, with huge divisions appearing between how people behave. This isn’t just applicable to autistic hate, but to all discrimination and hate. There are many people who sadly just do not want to consider the feelings of others or even contemplate another person’s point of view.
The bullying I have received within my local neighbourhood is clearly fuelled by ignorance. They have identified me as being “different,” but see difference as “bad” and instead of seeking to understand, only want to ridicule.
This mindset needs to be challenged – not just by me (the victim), but by others in the community. This is hard because not all impartial services recognise incidents as being driven by hate. Education and awareness is key to tackling ignorance and thus hate, but this needs to be done at an early age.
Sometimes it’s hard to know what to do as an ally, on an individual basis, but I always think that sharing information and speaking to others within your own personal network about autism is a fantastic supportive role.
Can you tell me about the book project you are currently working on? What is it about? Who is the audience?
A description of the official sales material is below. It will be published September 21, 2021 by Jessica Kingsley Publishers.
A Practical Guide to Help Your Child with PDA Live a Happier Life
Drawing on the author’s personal experience of parenting a child with PDA (pathological demand avoidance), this insightful and informative guide offers strategies and tips for all aspects of daily life, including sensory issues, education and negotiation. Full of advice and support, this book is not intended to provide information on how to change your children. Rather, it is focused on creating the type of environment that will allow children to be authentically themselves, thereby enabling them to flourish and thrive.
What are some of the autism advocacy topics you are most passionate about writing about?
I’m really passionate about social justice; challenging discriminative practices and raising inclusion for all autistic people. I think that this is best achieved through making space for autistic voices. I am a strong believer in the social model of disability and know that autistic people add phenomenal value to the world. Any topic that considers how to make the world more inclusive for autistic people is a topic that I will write about. I base a lot of my writing on personal encounters and experiences, but feel strongly that if a subject has impacted my family, then it will likely have impacted other people’s lives too.
Through my blog I aim to connect with other autistic people and families through shared experiences. I also write for mainstream media in the UK and try to use my space there to raise general autism awareness in order to tackle ignorance and hopefully gain greater acceptance.
Follow Alice on Twitter: @AliceRunning1