Above, a photo showing a collection of glass marbles. I used to collect them, as a child. I'd study them for hours, watching the way the light reflected off them...through them. Feeling their cold smoothness. Admiring their colours and arranging them so that they created a beautiful pattern.
Other deep fascinations I had were around horses, maps, grasses. Toy cars featured, and yes, I did indeed line them up, and spin the wheels on them.
I didn't talk. I could make word sounds, copying word sounds I heard from others, but it wasn't how I communicated. I communicated through pattern, colour, rhythm, body movement. I thought in pictures, 'videos', not words.
I'm now MD of a successful national Professional Practice that has run for 20 years, dealing with many of the top Blue Chip companies in the UK.
So, how did I get from collecting marbles....to running a company? What magic therapy, what intensive interaction, what amazing therapist did this?
None.
None at all.
Like hundreds of thousands of autistic people before me, and the same after me, we just learned.
Some learned the tough way, with violence if we did something 'wrong'. I wouldn't recommend that. At all.
So...ABA. Applied Behaviour Analysis. I write about it from time to time, as more and more concerns arise from research.
Here are a sample few papers that may be of value to you, in your quest to think deeply about autism and what's needed. Deeply in what we know about autism in 2019, not what we knew in 1940, to be clear.
https://www.tandfonline.com/doi/full/10.1080/23311908.2019.1641258
That is quite a piece of writing. It's an opinion piece, not fresh research, but the links within it will lead to a whole world of concerns about ABA.
If we want to continue with doing our best for autistic children, what about this
https://link.springer.com/article/10.1007%2Fs10803-017-3306-y
An interesting paper showing that in music therapy, it was in fact the quality of the relationship with the tutor that made a difference, not the therapy.
What about this one?
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
This paper noted that repetitive movement seemed, if anything, to help autistic concentration, not get in the way of it.
And this one?
https://link.springer.com/article/10.1007%2Fs10803-019-04138-2
It shows that it didn't seem to matter which therapy autistic children had, or for how long/how many hours. They still developed skills. So, that hectic dash to get them into the best 'therapy', for the most possible hours, at the earliest age? Might as well just sit back and read a newspaper, whilst a good Speech and Language person and a good Occupational Therapist sort out a best way for the fabulous young person to communicate, and the best way for them to do basic skills in a world that is too overwhelming for most of us.
What sort of overwhelming? Chris explains Roundabout Theory here: http://annsautism.blogspot.com/2018/07/roundabout-hypothesis-guest-blog-by.html
...and you can watch this fabulous short clip. https://vimeo.com/52193530 2 mins. Turn sound on, really really loud. That sort of overwhelming.
ABA is problematic, in my view. Here's a video of some. Watch the first minute. See how often the child is grabbed, moved, grabbed, moved, grabbed, moved. How the toy is given, the snatched away. Endless endless repetitive meaningless tasks. That's not OK, from my perspective. I wouldn't recommend it. https://www.youtube.com/watch?v=7pN6ydLE4EQ&t=504s
Autistic 'behaviour' doesn't have one neat cause, most of the time.
It may have many causes. Some historic, from memories or emotions of past situations. Some trauma-based, from poor treatment. Some around sensory need that isn't easy to spot. Some around communication, using autistic language, not non-autistic language. Yes, that's a real thing. The cause may be health related, or a spiritual or artistic need. It may in fact relate to entirely different things. Personality, ADHD, Ehlers Danlos Syndromes Restless Leg Syndrome, for example.
It may be many of those things, all at once. Including the trauma, which of course would need a very specialist and thoughtful approach from a very very qualified person.
But here's the terrifying bit.
Who would have guessed that an 18 yr old without a qualification of any kind can turn up at your door as a 'tutor', having probably never even knowingly seen a young autistic person before....and you would pay them to do a therapy on your beloved child.
Yes, some ABA specialists are qualified in child development as well, and I'm not talking about the ones who hold an additional appropriate qualification for applying therapies to children who are vulnerable and may have complex, overlapping and overshadowing diagnoses and situations. I'm talking about the average ABA interventionist at a parent's door.
This isn't a 'gold standard', is it.
This is playing with children's brains, without any actual RCT evidence to prove a thing. (RCT evidence is a proper big study, with children given a therapy...and other children not given the therapy...and really good long term studies of who did best, what harms, etc).
My concerns about ABA are shared by simply vast numbers. Here's just one example of many many surveys.
So, what helps?
Changing the attitude of the people around us.
The people around us learning about autism.
The people around us enabling us to see, hear and thrive, with simple accommodations.
The people around us respecting our different communication methods, and learning about them, and enabling us to learn about theirs. Both enjoying that learning. Both enjoying sharing. Double empathy.
Allowing a child to grow in their own time, whilst of course keeping them safe. Always take top advice on safety concerns.
Accessing good autistic experts to interpret your child's behaviour and help with sensory accommodations.
Accessing good speech and language experts, and occupational therapists who are trained in autism and sensory needs.
Trusting your instincts on which schools care about your child, if a choice is available to you.
Enjoying one another's company, as companions in life's journey. Watching the young person grow, and thrive, and share, in that caring and supportive environment.
Learning from autistic people online. So many blog, and give of their time freely on social media. But respect their boundaries, and their way of communicating. Ours is direct, honest, straight to the point, not 'rude'.
Twitter, with its #AskingAutistics hashtags can be useful. Or following threads like those I and others put on there to help parents with all sorts of autistic children. An example:
https://twitter.com/AnnMemmott/status/1122439058351894528
You might want to consider the SPELL training that's available from good providers.
You might want to get your school or organisation to use Synergy training from AT-Autism
You might just want to do your own thing. Many do. I know their autistic children. They're wonderful.
It's about love, you see. It's about love, and thriving, and sharing. And respecting difference.
Goodness me, we need families to have good support. No-one is doubting that at all. And we need young people's needs to be respected and good supports put in place for them, based on their needs, not on someone's probably faulty understanding of 'behaviours'.
But, without deep understanding and caring, there won't be thriving. There can't be. Nothing thrives in a forced repetitive intervention, pulled about and denied basics until there's total compliance.
Whatever you choose, I wish you and your fabulous young people a life of joy.
