Let’s talk about the Autistic community

Just before my youngest child was diagnosed, I entered into the world of “autism”. That was over 18 years ago. I didn’t know anything at all so I decided to change that. I started taking every workshop, conference, presentation and training I could. I needed to understand the Autistic Experience. I specifically wanted to learn from Autistic people and that hasn’t stopped. I ended up taking every training based on “strategies” like SCERTS, Intensive Interaction, TEACCH and SPELL. I also learned behaviour-based compliance training, such as PECS and Attention Autism. I instinctively either used them differently or not at all. because these never sat well with me and eventually, I learned why.

I ended up doing my post-grad in Autism via ACER, University of Birmingham and I loved every second of it. It was research and essay-based. I also learnt very quickly that Academia did not come easy for me. I am not an academic and my tutors were quick to let me know that, saying my Americanism got “in the way”. But the lecturers were amazing and most of them were Autistic. My questions were never too much for them and I became friends with a good few of them. Never, at any point in this time, did I even consider that I was also Autistic. Such was my internal abelism, that when I was asked I always dismissed it. When Autistic people said they assumed I was, I laughed and dismissed it.

Years went by, I had been working in a local primary school as a specific 1:1 for Autistic students and loved every second of it as challenging as it was working with little resources and less funding. Then the cuts came and I could no longer do the job I was hired for and expected to be a classroom TA as well as a 1:1 at the same time. I left and joined the local Authority Autism Advisory team. That only lasted a year and I could write a whole blog on the reasons I left.

I started working with my self-employed partner and became self-employed myself. I wanted to train staff in school as I had started doing when I was a 1:1 as well as consult with schools on how to support their Autistic students. I also wanted to support and coach parents of Autistic children to understand them and I still do both today, albeit the cuts and the financial situation schools face today not to mention the pandemic means I don’t have a lot of work with schools anymore. But I still love working with parents to this day.

I always deferred to the Autistic friends and people I knew as thought I was neurotypical, I did not want to speak over and for them. Through speaking with my Autistic friends, specifically Kieran Rose, Damian Milton and others, finally I saw it. I was Autistic too. I started to self-identify as I waited over 4 years for my official diagnosis. At 54 I was officially diagnosed Autistic.

It was an exhale. I felt validated and everything made sense. My imposter syndrome regarding my neurology was gone. I finally felt as if my experience and my opinion mattered as an Autistic person.

Now, and looking back at my experiences with the Autistic Community, I realise my naivety. Thinking that all those Autistic people advocating on and off social media were legitimate and trying to help the Autistic Community and those trying to understand the Autistic Experience. I assumed as I usually do with people, that they had no agenda besides trying to help. That they had good hearts. Oh how wrong I was.

Like any community, there are people who truly just want to help and support others and there are those with an agenda to become “popular” or be the only Authority on the Autistic Experience. Some of these people are not Autistic, but rather parents of Autistic children. “Autism Moms” in all their toxicity, scream that autism is some kind of defect to be corrected or their child deals with “severe autism”, separating themselves from the Autistic community. But some are Autistic too.

The Autistic community is filled with all kinds of Autistic people. Those elitists, who refuse to drop their Asperger’s diagnosis and embrace Autistic, regardless of the fact that the diagnosis doesn’t exist anymore and for good reason. Those who see their Autistic identity as a burden sadly and truly do need positive Autistic support. There are those Autistic people who do have an agenda and popularity seems to be the goal regardless of who they step on. There are also those Autistic people who are dangerous. Make no mistake that they exist, because they do. They have hurt many people. Sadly, I have met and known a few.

Autistic Academics can be two kinds of people, just like non Autistic Academics. Those who realise that academia can be out of reach for many others and don’t continually use jargon and terminology that many do not understand or at least explain it in terms easily understood. Their goal is truly the betterment of Autistic people. Then there are those who seem to not care and have an absolute arrogance about them as they continue to use the jargon knowing full well many don’t understand it. They don’t care and relish their place in academia. They see themselves as above others who are not academic.

There are Autistic people who do actually just want to help and support their community and do it unbelievably well. They truly care and their actions show it rather than them saying one word about what they do. They quietly run organisations that make a true difference to the Autistic Community. They go out and educate others as well as support Autistic children/ young people/ adults. They do it without any fanfare or need for praise. It is these people I try and surround myself with.

But as a Hyper-empathetic AuDHD (Autistic and ADHD) person I can get relationships very wrong. My effective empathy the emotions are quick to react and often so fast I struggle to control them. This can mean I get things very wrong when I do not mean to.

I believe people are good fundamentally and possibly naively believe the Autistic people I met were good at heart. I usually trust more than I should. I believe someone cares for me as I care for them. I believe they trust me as much as I trust them. I think they will support me as I support them. I have been very wrong in thinking that way many many times and shocked at how wrong I was. Usually, I was left feeling as if it was my fault for trusting so much. As if there was something wrong with me for daring to trust.

I am not young and when blindsided by someone I considered a friend, it still hurts. So, past traumas try to resurface and I’m left reminding myself that it is their loss, not mine. I am deeply grateful for the years of therapy because I don’t repeat the same destructive patterns I had in the past when this happened and I continue to work on myself. I just didn’t expect this in the Autistic community and I know I am not alone.

We think that the Autistic community is split because of “Autism moms” – those parents of Autistic children who co-opt their child’s identity with a victim mentality and there is. Absolutely there is. Their use of person-first language ( with autism) automatically shows the rift with Autistic people who use the social model (Autistic).

There are other rifts also in the Autistic Community just as there are all types of riftes in society today. There are all kinds of people in the Autistic community just like there are all kinds of people in society. Being Autistic doesn’t mean someone can’t be an absolute A**. Goodness knows I’ve met a few. But it does sadden me that we, a very marginalised group cannot seem to join together at least on things that seem to affect all of us, Autistic people. But I guess that’s just a reflection of the world we live in today.

So, I’m now careful about those Autistic people/advocates/professionals that I support and recommend to others. I am careful about Autistic friendships and those I collaborate with now. I pull away from those who take without giving anything back. I avoid and warn others about those who are dangerous when I know of them. It’s a sad but true reality that any community has its flaws and some flaws are worse than others.

But I truly do hope we can find a way to mend the rifts and change the world for the following generations of Autistic people.