Saturday, 20 July 2019
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 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.
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
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?
This paper noted that repetitive movement seemed, if anything, to help autistic concentration, not get in the way of it.
And this one?
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.
That's from https://autisticnotweird.com/2018survey/
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:
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.
Friday, 5 July 2019
There is much debate about cure, amongst autistic people, families and society. Some of it useful. Some of it generating a lot of anxiety or anger.
Some imagine there are only two possible groups. Those who don't want any autistic person given support, or medical assistance for anything medical...and those who want all autistic people medically or behaviourally normalised, and future autistic people prevented.
It's a far, far more 'multi-flavoured' discussion than that. Much like the picture of the different spices, shown at the top of this blog, there are different aspects of being autistic. Different things to consider. Different personalities. Different circumstances. Different levels of possible support.
As a professional in this field, and an autistic person with an autistic family, friends and colleagues of all kinds, I want each person to be free to make their own best choice.
What I don't want is lies, profiteering, or damage to autistic people. Those are the three things I am deeply concerned about, and three things I see far too much of from some places.
Most of the difficulties autistic people have are from some non-autistic people. That's a tough fact, but a fact it is, and we can't make it go away by ignoring it.
It's mostly some (not all) non-autistic people who control power in society, and budgets, and make decisions on whether autistic people get support. Whether we have buildings with lighting and soundscapes that mean we can access them. Whether employment has barriers so difficult that few autistic people can overcome them. Whether prejudice is allowed to build to such a level that autistic people are wrongly feared, hated, attacked, defrauded, bullied, ostracised. Look at the anti-vaxx groups as an example. They would rather their child died than have a child who is autistic. That is how bad the prejudice is now. We also see too much nonsense written about autistic people and published to earn a company some profits.
I'm very glad of allies. Allies who enable us, and look out for us. Allies who realise the myths about autism are exactly that; myths. That we are indeed generally honest, kind, fair, diligent people, gravely misunderstood for nearly 80 years. Here's my blog on some of the research. https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.
When we say we want autism cured, what do we mean?
I'm going to generalise. Every autistic person is different.
Autism is a different social communication system, which means we collaborate and socialise differently, often enjoying the company of other autistic people, but surrounded by non-autistic people who misinterpret us and get offended, thinking they're seeing rudeness.
Autism is a different sensory protocol, designed to spot danger around us and others, hence very sensitive hearing and sensitivity to anything different in the scene. Arguably we are, and always were, the 'early warning system' for communities. Focusing on the surroundings, not on the non-autistic social scene. That may have kept society safer for thousands of years.
Autism is a different focus, where we practise, and practise, and practise, until we master something. Build something. Create something. Something of value for all. That may have helped society build structures and systems that were fair, properly tested, good for all.
Not all autistic people have such skills. Every autistic person is a person of worth, a person who deserves to be fully themselves, and living their own best life.
Some autistic people (not all) find they are in too much sensory pain, and are desperate for that pain to be switched off or down. I fully support their quest for that to happen, if adaptations aren't helping.
Some autistic people (not all) find they are in great difficulties with planning and carrying out tasks, because their internal 'organiser' is amazingly disorganised, and they very much hope that they could improve this. I fully support that.
Some autistic people (not all) cannot use spoken language at all, or perhaps reliably, and very much wish to (although that's not autism itself, as quite a few autistic people can speak just fine. So it's a 'comorbid' (hate that word...). They might want to use spoken language better, and if they do, I fully support their quest. Although for me it is a pain in the, er, language department and I'd be happier just typing, personally. I blogged on that too.
Some autistic people also have a very low IQ and wish theirs was higher. A low IQ is not autism. It's another 'comorbid'. But if they wish to have a higher IQ, and there was a way to do that, I'd support it.
But...what does 'curing autism' mean?
Can we just 'cure' (say) sensory pain and planning difficulties, but leave the useful parts (as defined by that person?). Perhaps. No idea.
What happens if we try?
What if the 'cure' goes wrong? What if tinkering about with genetics and potions actually leads to disasters, to things becoming worse, not better? We barely know how to give an autistic person a standard medical treatment without noting it has a vastly different effect on us, compared to others. Tinkering about with genetics? That's serious stuff. Messing about with medication, in the hope it only 'removes' a problem and not something vital? That's impossible to say. It's why messing about with the genetics of people is so carefully controlled by international groups. Almost no drugs are tested on autistic people.
I also worry greatly about a future where our plans for helping autistic people are built on lies.
Lies that 'all' autistic people are tragic burdens that cost £millions. That one really is a breathtaking piece of nonsense.
Lies that 'all' autistic people suffer.
Lies that 'all' autistic people wreck the lives of others.
Lies that 'all' autistic people lack emotion, empathy, humanity.
I see those lies Every Single Day of my professional life, from some groups and from some specialists.
Lies that we are behaviours that need controlling
Lies that without treatment X, we are incapable of learning anything, ever.
If we spent even a thousandth of the quest-for-cure monies on actually improving autistic lives, actually providing autistic-led, autistic-requested support, actually countering the lie-mongering...I wonder how much better life would be for families? For individuals? For society, able again to benefit from autistic people instead of using us as scapegoats?
There are countless £millions being spent on a quest for a cure, and the background papers aren't about improving our lives. At all. I've read some of them and it's shocking stuff. The background papers are about improving the profits in the bank for the shareholders, and we are the tool by which they're going to do that.
That, my friends, is what worries me.
And, it should worry you too.
Because a population that is portrayed as nothing but tragedy, nothing but burden, nothing but cost and misery...well that is a perfect target for profiteers.
Don't you think enough non-autistic people have profited from us already?
I'd like to see a world where we honour, respect and enable autistic people.
Where we truly listen.
Where we are free to identify all who are autistic, and stop imagining that autism looks like a multiply-disabled non-speaking young white boy or a white male computer engineer in his 20s.
Where we affirm the importance of positivity and support, instead of imagining that such things 'fail to affirm the problems of others'. (Nonsense. It's perfectly possible to affirm good things, as well as support those who need support,and offer medical treatment to those who have medical conditions such as IBS, EDS, epilepsy)
Where we encourage specialisation, and put in place good housing,doable jobs and vocations.
Where we acknowledge the autistic people who are in employment, who are retired, who look after family, who bring up children, who serve charities, who support one another. The weird stuff where we are either in full time work, or are 'tragic burdens' is another myth, isn't it.
Where we stop seeing full-time-work as the only measure of human worth.
Where we take time to walk in friendship, learning autistic culture and communication. Observing caring, love, sharing. Creativity, art, poetry, music, flow, rhythm.
Realising that autistic people aren't naturally rude at all. It is a misunderstanding.
Celebrating with the Autistic Pride movement and all it is bringing to confidence and authenticity.
And where those who need support or treatment that actually does help with pain, fear, depression and anything else negative, can find that in safety, with their lives and wishes at the centre of that quest.
Like so many of my fellow professionals, I have serious concerns about the cure-industry that is happening.
I think autistic people are a vital part of society. As vital as every other person. Bringing different perspectives, different integrities, different skills.
I think if we forget that, there will be a catastrophic cost to us all, in a world where we need every kind of mind to help us all survive.