I want to talk about people who insist that “real autism” is a thing, and who wander about saying things like:
“Those autistic people who are against extreme control of autistic children—they have no idea what a Real Autistic Child is like and how much damage they can do to themselves and others—we’re only being kind.”
It’s two separate levels of anti-autistic thinking, and I want to talk carefully about the false or misleading story (narrative) behind each one.
Let’s first take the one that says the children injure themselves or others, so Must Be Stopped.
I first started working with autistic children, young people and adults in the early 1990s.
It’s now approaching 30 years later.
Number of autistic individuals who have ever attacked me?
Number of autistic individuals I’ve had to restrain/put in seclusion?
None. Odd, isn’t it.
I’ve not had to put any in a padded cell. I’ve not had to wear any protective clothing.
In some settings I’ve been handed alarms to call an attack-squad (my term for them) if needed. I’ve never needed it.
What’s going on? I’m no superpower. Just an ordinary autistic mum. So, what’s happening here?
Step 1 is that I can only access a space if it is autistic-accessible. Otherwise my brain may overload and have a brain event. So I only meet them in spaces we can both handle.
Step 2 is my attitude. I really, really look forward to meeting autistic people. Letting them be autistic, speak autistically, move autistically. Stim: flap, rock, spin, line things up, whatever works for them, as long as it is not causing injury of course.
When I meet them, I’m as neutral, quiet and slow as possible. I’ve thought about minimising perfumes, psychedelic patterns on clothing, etc. I’ve thought about moving quietly. I’ve offered a gentle smile and genuine autistic welcome, free of eye contact and overwhelm. I ask their permission to move into their personal space and stay there as little time as possible. I do not touch their things without their consent, and I’ll watch all the time for anxiety about this, and give their things back gently in good time.
I’m meeting an equal. A fellow human being. Someone who is having a tough time. Someone who has been dealing with traumatic stuff and needs space to trust again, to heal again. I’m there to really listen, really learn.
For sure I have a natural advantage. I’m autistic myself and have spent a lifetime in autistic spaces, at home, with friends, and in the culture we ran our family business. But, I see nonautistic people who have had low-arousal, properly trauma-considering training, who are also fabulous.
I’ll give an anonymised example of how the team/family member’s attitude makes almost 100% of the difference: I went to a site to meet a young person who was in a very secure isolation room with lots of staff allocated to ‘control’ them.
I was given alarms and training and told all about the cameras and the strike-squads (another term I used for these ridiculous huge teams that appear suddenly to wrestle people to the ground).
I had a great time with the young person. A gentle chat. A lot of smiling. With us was a care worker.
Gentle, kind, friendly. Wonderful.
Then it was staff changeover, and in came another care worker to take over.
The young person, and I, both froze. Instantly.
Gone was gentle, kind and friendly. Enter Mr, ‘I am in charge and don’t you give me any nonsense!’
It was an extraordinary transformation, and the impact was equally extraordinary. The individual didn’t even have to speak.
The co-operation was gone.
The communication was gone.
The trust was gone.
Too often, teams cause the “behaviour” that they blame on autism. It’s often their own approaches that need changing. Wrestling people, restraining them, locking them up, taking their stuff, demanding ‘compliance’.’ It’s little wonder that people respond with fear, with desperation.
That’s why I work with teams training staff on how to relax and be a calm and gentle presence. And why I recommend teams offering low-arousal approaches that seek to reduce or remove all restraint/seclusion from our lives.
So… that’s elements of how my approach to our lovely autistic people differs from the ‘strike squad’ approaches.
Second, let’s now think about the attitude to autistic advisory consultants like me.
“Autistic people who can be advisors don’t have any insight into the condition of people with ‘real autism.'”
“The autistic advisor might become as unstable as the patient—you want proper teams, not ones that ‘go off the rails,’ eh.”
That story, that narrative, is why their young people are in crisis. That attitude is why it happens.
Some teams never think of us as fellow human beings, as team members who they can consult. They think of us as wild animals at the zoo. It’s their own insecurity, lack of good modern training, and lack of understanding that’s often behind it.
Sometimes, alas, it is money behind it, from a few organisations paid a breath-taking fortune to effectively put a young person in a cell and invent (or provoke) reasons to keep them there. Anyone who thinks the world is full of kind people who’d never do that needs to rethink.
When I talk about the extremist behaviourist approaches that keep such children and young people prisoner, exhausting and breaking them, I’m not doing so because I’m a clueless individual or troublemaker.
I’m doing so because the teams need to change their understanding, their narrative.
I’m only one of so many fantastic autistic advisers, trainers and consultants who operate in this field. So many are qualified, insured, trained on safeguarding and with excellent track-records.It is never OK for other professionals and teams to undermine our work.
There are also an awful lot of allies out there who have had the modern training, work with us, and are all-round excellent people. My thanks to them for the work they do trying to dismantle the “shove ’em in a cell/force compliance” thinking that has kept going for decades.
Am I wrong to push for change? No. The UK Parliament’s Joint Human Rights Committee report condemns,
“…the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”
So, no, I don’t buy the tale that, “We have do this stuff to the People With Autism, or else there’ll be danger.” Nor do I have to tolerate the undermining of autistic expertise.
Working with us autistic people is the only way forwards, as wise guides to autistic lives, and as a pathway to meaningful and authentic quality of life and full rights for autistic people.