Monday, 28 May 2018
"If you've met one person with autism, you've met one person with autism"? Read on...
Turning the pages of a book, I read the words of an autism researcher. What's the point of the word 'autism', they asked, if every autistic person is different? They referred to the phrase, "If you've met one person with autism, you've met one person with autism.". It's a well known phrase, although using language that is long out of favour in the autistic communities.
There seems to be a misunderstanding.
All people are individuals.
People who are wheelchair users are individuals.
People who are Blind are individuals.
People who are Deaf are individuals.
People who are all 5ft 6 are individuals.
Being an individual does not mean you are suddenly able to see. Being an individual does not mean you are suddenly able to hear. Being an individual does not mean that you have stopped being autistic. Being an individual does not stop lots of people from being 5 ft 6.
What do we mean, when we say that all autistic people are individuals? Does it mean that our needs and differences are so diverse that there's no such thing as 'autism'? I do not believe so, no.
Autistic people have sensory processing differences that are markedly different from those of others. I've yet to find one who doesn't, though some are blissfully unaware of those sensory differences as yet. Which senses, and in what way...that's the difference.
Autistic people have a need for forward planning and good routine, to avoid sensory and social overload. Much much more so than an average non-autistic person. The differences are around what helps with that, and how much variation can be tolerated from day to day.
Autistic people have difficulties interpreting the body language and face expressions, eye contact and voice expression of non-autistic people, and vice-versa. What's different is the degree of it.
Autistic people need life to be logical, fair, honest. Far more, on average, than the average non-autistic person. Our outrage when people break rules, tell lies for personal gain, can be far, far more outraged than a typical non-autistic person. The differences are in what the person finds particular outrageous.
Each autistic person also has their own personality. Some quiet, some not. Each is their own age, from their own background, their own accent, their own educational level and set of IQ and ability scores. Their own gender and sexuality identities. Their own faith, or not. Their own ethnicity. These and many other individual things. Those are not different 'autisms'.
For a long time, we had standardised autism to an extraordinary degree. We seemingly believed that all autistic people were clones of 'geeky boy', Rain Man, or Temple Grandin. It seems to have been a huge shock to a number of professionals and researchers that we are a varied bunch. But a varied bunch who are all autistic.
Simple, really.
Sunday, 27 May 2018
That group includes autistic people?
I am grateful to an online colleague for mentioning this diagram. It shows different levels of attitudes to a group. How much that group of people is really included, really empowered, really respected and trusted.
These are some possible thoughts about it all, just to help others to start with the thinking.
At the bottom of the 'ladder', manipulation. Where the people with power decide that autistic people must simply be lied to, to get us to do things that they want. Or, lied about, to get others to ignore, exclude or fear us. We're actively distrusted.
Next up, just therapy. Not any actual consent or sharing. Not good therapy. The sort of therapy where the people with power decide we are broken, and need fixing. So they make us do therapy whether we consent or not, whether it is good for us or not. No matter how much we express pain, fear or exhaustion.
Next, just informing autistic people. We are not part of the decisions. The people with power make the decisions, then tell us what those are. This is not sharing, or respect, or inclusion.
Next, just consulting us in problematic ways. (Not good consultations with trusted partners.) We do not decide what we're being consulted on. We're not the people who make the final decisions. We are invited to a room and asked questions and the data is collected. Then we are sent on our way. The report is not written with us. We are not put in front of the powerful decision makers. Quite often, the 'consultation' reports are shredded and the powerful people do what they like anyway. But they can tick a box saying they 'consulted'.
Next, placation. When autistic people raise concerns about something, someone says sorry. Someone promises it will change. An actual start to someone stepping away from their position of power to say something with some humility. But...is it? Or do they do the exact same thing again, having said sorry? If so, that was manipulation, not placation.
Now we're into the bits where autistic people are starting to be respected. Partnership. We work with organisations, as part of their team. Not a powerful part, not a part with the final responsibility, but a part. A volunteer on the team, named and visible, perhaps. Maybe even paid a small amount (not as much as other people who aren't autistic, normally). Enabled in a supportive way, with leaders speaking firmly about respectful behaviour around us.
Then, the next level - delegated power. We are given Actual Responsibilities. Not top power, but we're allowed to decide on things, given proper status alongside other junior managers or leaders. Paid properly. Enabled properly. Respected. Not put into situations where others are allowed to undermine us, and then those with real power say, "Well that just goes to show we shouldn't have any more autistic people working with us, eh?". That's not delegated power. That's manipulation.
Then, the top level, proper management power, proper leadership roles. Fully paid or responsible, fully empowered, fully able to hire, fire, make really huge decisions with others. Fully trusted, fully enabled, fully respected.
Where, on this list, is the group or organisation you're thinking about?
Where is a person you deal with, on this list?
Where are you, on this list, when you encounter an autistic person?
It's a good list to think about, I find.
These are some possible thoughts about it all, just to help others to start with the thinking.
At the bottom of the 'ladder', manipulation. Where the people with power decide that autistic people must simply be lied to, to get us to do things that they want. Or, lied about, to get others to ignore, exclude or fear us. We're actively distrusted.
Next up, just therapy. Not any actual consent or sharing. Not good therapy. The sort of therapy where the people with power decide we are broken, and need fixing. So they make us do therapy whether we consent or not, whether it is good for us or not. No matter how much we express pain, fear or exhaustion.
Next, just informing autistic people. We are not part of the decisions. The people with power make the decisions, then tell us what those are. This is not sharing, or respect, or inclusion.
Next, just consulting us in problematic ways. (Not good consultations with trusted partners.) We do not decide what we're being consulted on. We're not the people who make the final decisions. We are invited to a room and asked questions and the data is collected. Then we are sent on our way. The report is not written with us. We are not put in front of the powerful decision makers. Quite often, the 'consultation' reports are shredded and the powerful people do what they like anyway. But they can tick a box saying they 'consulted'.
Next, placation. When autistic people raise concerns about something, someone says sorry. Someone promises it will change. An actual start to someone stepping away from their position of power to say something with some humility. But...is it? Or do they do the exact same thing again, having said sorry? If so, that was manipulation, not placation.
Now we're into the bits where autistic people are starting to be respected. Partnership. We work with organisations, as part of their team. Not a powerful part, not a part with the final responsibility, but a part. A volunteer on the team, named and visible, perhaps. Maybe even paid a small amount (not as much as other people who aren't autistic, normally). Enabled in a supportive way, with leaders speaking firmly about respectful behaviour around us.
Then, the next level - delegated power. We are given Actual Responsibilities. Not top power, but we're allowed to decide on things, given proper status alongside other junior managers or leaders. Paid properly. Enabled properly. Respected. Not put into situations where others are allowed to undermine us, and then those with real power say, "Well that just goes to show we shouldn't have any more autistic people working with us, eh?". That's not delegated power. That's manipulation.
Then, the top level, proper management power, proper leadership roles. Fully paid or responsible, fully empowered, fully able to hire, fire, make really huge decisions with others. Fully trusted, fully enabled, fully respected.
Where, on this list, is the group or organisation you're thinking about?
Where is a person you deal with, on this list?
Where are you, on this list, when you encounter an autistic person?
It's a good list to think about, I find.
Friday, 18 May 2018
Driving Whilst Autistic
I have had some interesting conversations around autism and driving, this week. It led me to look at some research into this. It is fair to say that I was, er, surprised by my findings.
Firstly, almost without exception, the 'test subjects' in the research were young men of between 16 and 25.
Almost no female or other genders. Thus cutting out almost half of the autistic population from the research.
Almost no adults in their late 20s, or indeed their 30s, 40s, 50s, 60s, 70s or older. In other words, during all the years when people normally drive, or may learn to drive when older.
Some of the researchers decided it was too much bother to ask the actual autistic young adult drivers, so they asked their parents to fill out the questions instead, I kid you not.
Other researchers decided that it was a really good plan to test autistic people by putting them in front of three huge flickering screens in a mock-up of a driving position, and do a computerised simulation. This would be the same as their actual driving skills in natural light on a real road, in a real car, they mused, not knowing anything about autism it seems.
Yet more researchers decided that autistic people were 'bad' because they paid equal attention to objects and people in these computer simulations. Whereas the 'correct' response was to pay attention to people more than objects, when driving. Apparently they failed to ask the autistic people why they paid attention in such a way. After all, if you can just portray us as 'bad', job done? I might point out that a computer simulation of a person is not the same as a real person, for example.
And some of the researchers seemingly ignored recent studies showing that, on the road, in a real car, autistic people were as good or better than the non-autistic ones. More careful, better understanding of rules, etc.
Talking with autistic drivers who have driven for decades safely and without problems, several have told me that one of the biggest obstacles in learning to drive was the appallingly bad non-autistic instructors. They simply wouldn't explain things in a clear way, and assumed that the autistic person could interpret and 'fill in the gaps'. Then, if the autistic person got it wrong, "Well, it's their autism, innit".
Is it?
Like every other sort of person, some autistic people can't drive. Some autistic people attempt to pass a test and don't. A few autistic people are not good drivers. Some autistic people are average drivers. Some autistic people are excellent drivers.
Just like everyone else, if given the same chance to learn the skills, in fact.
Each autistic driver has to pass a competence test. It's called the Driving Test. Same as everyone else.
Turning to the DVLA, the organisation in the UK who handle driving licenses for people, their website (paraphrased) says "if" someone's autism means they shouldn't drive because it's not safe, then, er, they shouldn't drive. A strange statement, whichever way we look at it.
One doesn't become autistic after passing a test. One is born autistic, and is autistic for life. So someone who is deemed competent by an examiner is indeed as competent to drive as everyone else who passes their test. In fact, many autistic drivers show great strengths such as diligence, honesty, carefulness, fairness and accuracy, as well as often having a really good knowledge of cars/maps/road signs etc. I've had the honour of driving with so many fantastic, very safe autistic drivers, including those within our own family, and observing their skills over decades. Researchers should try that instead of getting out a computer.
I'd quite like our researchers to do some quality research into autism and driving, because this is important stuff. Autistic people are rarely able to access public transport in any good way, and for many, the car is freedom, opportunity, a social life, and (vitally) a way to get to work and back. What we need is really good research that looks at the whole range of autistic people, not just 5% of us. Research that looks at fair testing of skills, looks at how we can improve the process, ensures that we have more instructors with autism knowledge, and produces better ways to enable people to learn accurate, safe skills.
Analysing a group of teenage lads playing on a computer does not in any way represent a driving research project worthy of the name.
The picture at the top is a green open top racing car, parked in a warehouse.
Monday, 7 May 2018
Dear Church. You know I love you. But we need to talk.
Dear beloved church of mine.
You know I have spent 20 years serving you? As an adviser who has co-written Policy for the Archbishops’ teams? As the main lead on autism for a decade? As a speaker, trainer, prayer partner, friend?
You see, I’m autistic. And, well, there’s no easy way to say this. Your words can hurt. They wound. They injure. They humiliate. They dehumanise.
I know. I know you don’t mean to do these things. I know you want us all to thrive. But, well, let me explain.
Yesterday, I opened a new book by a senior church figure. Being Human. Published this year by SPCK, a charity whom I have supported for a time and who do fabulous work with me. The book is written by a fine mind, a person well known for their kindness.
Yet..well, walk with me through this extract...
“I find some of the most suggestive, creative and challenging insights come from looking at how people work with those living with autistic conditions..or dementia..It’s when we see malfunction or challenge of this nature that we begin to see also what we take for granted...what we mean by consciousness...”
Turning to the blog of another senior figure, we read him quoting from a text, “..The autistic or Down’s Syndrome child, the derelict, the wretched or broken man or woman, the homeless, the diseased or mentally ill...to be able to see in them not only something of worth, but indeed something potentially godlike, to be cherished and adored, is the rarest and most enobling unrealistic capacity ever bred in human souls.”
So, malfunction...or an act of unrealistic nobility to see that of God in me.
Well, my loved friends, that hurts.
You may not mean it to.
But I want you to walk with me. The me that is a human like you. With feelings like you. Loved by God like you. Cherished by him like you. Bringing our whole selves to his service, like you. As leaders, as prayer partners, as friends, as people of honour and integrity. You see, it's endless, the list of negative things we wade through in life. Just endless. Example after example in theological writings, from these fine authors and others, using me and my lived friends and family of all autistic kinds as the examples of the monster, the tragedy.
When you write of us, could you try to write as you would write of a friend? Could you write of us as a fellow disciple? Might your words reflect the knowledge that autism never was a lack of humanity, but a misunderstanding of communication and sensory differences? Autistic people are generally kind, caring, courageous, a blessing. But so often placed in great pain and distress through ignorance of our differences.
Could you perhaps avoid comparing us to inhumanness and brokenness to see how close we match up? It hurts. I am sure it hurts all the others in those awful lists too.
Autistic people yearn to read that we are welcome at that table alongside our loved friends, in all the love and sharing that our faith brings.
Thank you for reading.
Sunday, 15 April 2018
“You don’t know what it is like to be an Autism Carer”
I see a lot of my autistic colleagues being told this. I have been told this, often.
It comes from a deep misunderstanding of autism.
I am a parent. I am autistic. I grew up as a young carer to a desperately ill mum, without a shred of support from Church or society. What I say next is not a plea for pity, or a bid for Sainthood. It is simply a list of facts.
It was hard work to battle the systems. Get the right medical help for mum, during times when she was a danger to herself and others around her. That wasn’t evil. It was a medical situation that she could not control. It was harder work when autistic myself, nonverbal during times of stress and overload. I learned a lot about survival. I learned a lot about love.
I had to organise the funerals of my parents whilst I was in my 20s.
I wonder if you can imagine what life was like? I am not alone in this history. I have good friends who are autistic and have been carers almost all their lives,
As a parent, I had to find ways to honour each autistic member of the family. Support each one to be the best they can be. Be there through good times and bad. Find a path through schools. Cope with running a business through two recessions on top of much of this. Cope with very tough cancer treatment in 2011-12. Put up with some business and Church people making it tougher still.
I am still here.
I am still here to consider the lack of support for me as an autistic carer, and parent. Autistic parents aren’t supposed to exist, it seems. But we do. Thousands of us, caring.
I am still here to wake up to a bunch of people telling autistic parents like me that we don’t know what it’s like to be a carer. Many good people out there of course. But some...well, where does that myth come from?
It’s simply wrong.
We know.
And, we continue to love. Continue to hope. Continue to offer our knowledge and our advice about autism. Continue to support those around us. Continue to tell people to find and hear all sorts of autistic people. Continue to campaign for equality. For justice. For the right to do the things others can do. Continue to ask for the support that all need.
It would be great if we got support also.
We need fewer people saying, ‘...those dreadful autistic people..’ , and more saying, ‘How can we work together to bring about a good result for us all?’
Thank you for listening.
It comes from a deep misunderstanding of autism.
I am a parent. I am autistic. I grew up as a young carer to a desperately ill mum, without a shred of support from Church or society. What I say next is not a plea for pity, or a bid for Sainthood. It is simply a list of facts.
It was hard work to battle the systems. Get the right medical help for mum, during times when she was a danger to herself and others around her. That wasn’t evil. It was a medical situation that she could not control. It was harder work when autistic myself, nonverbal during times of stress and overload. I learned a lot about survival. I learned a lot about love.
I had to organise the funerals of my parents whilst I was in my 20s.
I wonder if you can imagine what life was like? I am not alone in this history. I have good friends who are autistic and have been carers almost all their lives,
As a parent, I had to find ways to honour each autistic member of the family. Support each one to be the best they can be. Be there through good times and bad. Find a path through schools. Cope with running a business through two recessions on top of much of this. Cope with very tough cancer treatment in 2011-12. Put up with some business and Church people making it tougher still.
I am still here.
I am still here to consider the lack of support for me as an autistic carer, and parent. Autistic parents aren’t supposed to exist, it seems. But we do. Thousands of us, caring.
I am still here to wake up to a bunch of people telling autistic parents like me that we don’t know what it’s like to be a carer. Many good people out there of course. But some...well, where does that myth come from?
It’s simply wrong.
We know.
And, we continue to love. Continue to hope. Continue to offer our knowledge and our advice about autism. Continue to support those around us. Continue to tell people to find and hear all sorts of autistic people. Continue to campaign for equality. For justice. For the right to do the things others can do. Continue to ask for the support that all need.
It would be great if we got support also.
We need fewer people saying, ‘...those dreadful autistic people..’ , and more saying, ‘How can we work together to bring about a good result for us all?’
Thank you for listening.
Saturday, 7 April 2018
Autism Mythbusting: Employment.
"Only 16% of autistic people are meaningfully employed". Quite often we see that said or written, in the UK, in various forms of wording.
Well, no.
Certainly a survey of around 2000 autistic people was done by a large charity, some time ago, They found some 32% were employed, but 16% full time. That may be the source of the "16%" myth.
"But Ann, if it's a proper survey, it's not a myth", I can imagine some saying.
Let me explain...
You see, we have to ask who answered that survey. People involved in some way with a support charity, thus more likely to be not-coping-too-well. And, many of the people answering the survey were parents, not the autistic individuals themselves. The survey was done for a campaigning purpose, by a specific charity with a specific agenda, thus not fully independent.
There's other problems with the 16% myth:
We know that many autistic adults have yet to be diagnosed. So, what are they doing? We don't know.
We know that many autistic adults haven't a clue that they are indeed autistic, so aren't anywhere near a diagnosis. What are they doing for a job? We don't know.
We know that many other autistic adults do not wish for a diagnosis, because they are afraid of prejudice. Nor do they wish to disclose that they may be autistic, or disclose a self-identification as autistic. In their view, they have found a niche, a way of being, that means they do not need to do so. A fair point of view. What are they doing for a job? We don't know.
We know that many autistic people ask for a diagnosis and are told 'no'. Sometimes for cost reasons. Sometimes because of those other myths... that autistic people are all male, all geeky, all youngish, fascinated with maths and science or flapping in a corner or doing card memorisation tricks. All white. All of the same culture. All of whom allegedly couldn't care less about others. A host of myths. So, all the individuals told they aren't autistic because they are not a young white introverted boy with a liking for trains...what are they doing for jobs? We don't know.
Generalising:
We miss the ones who are genders other than male.
We miss the ones who are extravert.
We miss the ones who are creative, kind, generous, because of myths around nastiness.
We miss those within BAME communities.
We miss the people who are older.
We miss the myriad autistic people who are already right here, next to us, in society. Already doing a great job (though often struggling to stay employed, as the socialising is exhausting and bewildering, and their place of employment may be sensory hell for them).
Already being honest.
Already being dedicated.
Already being a huge asset to the places in which they work.
Maybe already being the employer. I am. I have employed people for nearly three decades. Some autistic. Some not. Fantastic experience.
So, who answered that survey? Mindful of a Twitter survey of some 300 autistic people, 24% of whom are in full time employment. Mindful also that the figure for full time employment in the general population of the UK is only 36% - so barely more than a third in full time employment anyway. The gap is not huge.
It cannot possibly be representative of all the autistic people in the UK. Not so much the fault of the researchers. More a reality of a system that forces autistic people to hide, because of the horrifying myths about us.
We are also guided by research from abroad which has mentioned statistics re employment:
https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1645-7 A survey from a European country. 65% employed.
http://papyrus.nzetc.org/bitstream/handle/10063/8022/thesis_access.pdf?sequence=5 p43 showing this interesting breakdown. Each bar shows (left to right) work full time, work part time, unemployed, parent, student, self employed, volunteer and retired. 83 autistic people. 134 non-autistic. Wide variety of ages, though the autistic people slightly younger on average. There's no doubt that it's different. But only a relatively small number were unemployed and doing nothing much. We should bear in mind that 'part time' work might mean 30 hrs a week and more than enough for basic needs, so we need to move away from the idea that it's someone earning £10 a week folding papers to go into envelopes for someone, or 2 hrs a day stacking a supermarket shelf. (One of the myths about part-time work for autistic people...).
If we add up the employment/self-employment figures for the autistic people, about 54% employed.
Wider information includes informal polls of autistic people done in the UK on social media. Here's one by Shona on Twitter. 51% employed. Didn't ask about self-employment. Self selecting, not checked for diagnosis, of course, but interesting, and nearly 300 responses.
So, we need to think anew re what 'non-employed' autistic people are doing. Are they all sitting around being a 'Tragic Cost To Society?' <cue violins playing> Nope.
Many autistic people I know are volunteers for organisations, doing fantastic community work. Many offer fabulous support & friendship to other autistic people, helping provide a vital informal network of advice and cheer, in a world that offers most autistic people nothing at all.
Many are at home with their children, doing a wonderful job bringing up those fine young people.
Quite a few are in full time or part time education, studying for qualifications including higher degrees. Some are unpaid researchers, thanks to a very odd way of funding such work.
Some are unable to work because of their health situations and other situations, including a severe lack of clue about autism by some job centres and some employers. Good to see work happening to improve this. Often, they are then offering peer support to others online. Some have been outright bullied out of their jobs. Hardly their fault that they are without an income, therefore, and nothing to with 'their autism'. It's about prejudice.
Very, very few autistic people sit around being financial and social 'burdens'. I hate that word. I really do. It entirely fails to capture the humanity and worth of people of all kinds.
If you are autistic, go to work and are expected to be non-autistic when you walk through the door, that's not good for anyone's health and wellbeing.
If you walk in and cannot see or hear in the sensory hell (when the solutions to that are simple, cheap and hurt no-one else), you can't do your job.
If you go into the office and are met with a barrage of hostility every day, because of myths and misunderstandings (or just plain bullying) you can't remain employed.
Above, how I see an office environment under fluorescent lighting. One example. Not handy. Dazzling colour. Bewildering flooring. Blinding. Exhausting. Such lighting flickers like a strobe light, too.. A change of lighting system for my bit of the office solves it, and costs almost nothing (as there's energy savings too). Or I can work from home for a lot of things.
I work full time, running a national company. My sensory needs are major. It was easy to solve. It will be easy for most others to solve, too. The photo at the top is my office. Parents, I was non-verbal for years, typically autistic. Want your young person to be doing similar? Believe it can happen.
There's ways round the obstacles, but people have to know the obstacles are there. Then take them seriously. Autism buildings access is important, and in the UK, a requirement under the Equality Act, as well as being good news for your business. It's probably 1 in 30 of the people around you. (No, really). Including your customers.I'm going to be clear that I believe every single autistic person is a person of worth, a person deserving a good life, whether they are able to work or not. Each of equal value to society.
In this blog, I'm focusing on the autistic people who are prevented from working, when they would like that opportunity. Or who are stuck in menial jobs because of the lack of ways to progress. Or who try their hardest to find work, and are prevented by that huge obstacle, the social-skills-interview. [Are you an employer? No need to interview autistic people at all. Just do a work experience test, properly thought through. Help exists to enable this, if unsure.]
Instead of blaming 'the autism' for the employment situation, we need a better set of strategies.
We need acknowledgement that our statistics are not good enough. Mostly they terrify the heck out of parents, who think their child has almost no chance of a job. That's simply not true. It is true that some have profound support needs that mean they may not do paid work. I and many others have worked hard for decades to help ensure that there is good support for such situations, for the person and for those providing the supports. I am a parent to an autistic son. I know what sort of a struggle the world gives parents.
And, as part of that, we need to be clear that few autistic people have profoundly low IQs. I've blogged about this also, showing the research. So it's not true that 'most' autistic people cannot communicate or work, if supported and enabled.
We need a world where it's OK to say, "I am autistic" without the threat of someone removing your job in ever-so-subtle-ways. And some not so subtle.
We need a world where people see the word "autistic" and think, (for example), "Oh great - someone who is honest, dedicated, creative, hard working, can see different possibilities that we might miss. I can ask them what they need for sensory environment. That's doable. I can skill my workforce to respect their different way of communicating and socialising. There's good training for that at a fair price, from actually-autistic trainers. This is pretty easy. My company benefits from having minds that can see the picture differently. More profit, better products, better outcomes."
Then, we will have a situation that is better for everyone.
This isn't an act of charity. Autistic members of staff are a brilliant thing to have, when enabled. You probably already have some...have you asked? Have you made it OK to disclose? Or do your specialists, your fabulous autistic team members, still have to live in fear of your responses? Own those responses. Change them.
Get good training in autism. Look for training companies run by, and using, autistic trainers. Or companies run by allies who bring in paid autistic people to help, who showcase autistic work. Then you know you have autism-positive, accurate materials, not myths.
Put up positive autism-acceptance messages about your company or charity. Make sure we know it's OK to work with you.
Thank you for listening.
Saturday, 24 March 2018
Social Worker Training and Autism
For a good few years now, I and other autistic professionals have been training Social Workers. Sometimes, trainees, but more often ones who have been doing the job for a very long time. Some, in very senior roles.
One recent session, part of a series, saw around 40 Social Workers trained. As usual, some of senior rank amongst them. The team covered autism training for a day, so around six hours of updating people on the latest thinking. When we do the training, we're talking about the research, the brain scans, practical examples, exercises. This isn't a random autistic person standing up to talk about their childhood as a sort of 'zoo exhibit'.
At the end of it, there was a queue of Social Workers coming up to us, to say, "Thank you, that was brillliant" and "That was amongst the best training we've ever had", etc. One in particular said, "I had no idea. None. I've been filling out the assessment forms for years and until this session, I did not know what I was doing. I would have put 'not applicable' through most of it". Another, "I wouldn't have known you were autistic. I was so focused on autistic people in care homes - you know with multiple disabilities or learning disabilities as well. I didn't know how much knowledge I was missing on autism."
Recalling prior sessions, these are common comments.
The picture at the top shows 100 dots. Let us assume those are 100 autistic people. Two of the dots are a different colour. That's the proportion of how many autistic people are in care homes in the country. The rest of us are expected to cope in society. Whether by living collaboratively with family, or on our own. And, to our credit, many of us find ways to do that, with the mutual support of one another.
We are 98 out of those 100, and the focus of Social Work training has most often been the other two percent. The other two percent are important, of course, also.
This presents a considerable problem for safeguarding, in particular. If you are trained to believe that autistic people are in care homes or supported living, rocking and flapping, barely able to hold a crayon, barely able to add two and two together....and you see someone like me...well, what are you going to think? You'll think there's nothing to consider, perhaps. That it's a trivial thing for us to live in a society where there are predators, and where one has to negotiate with fellow humans for just about everything - from friendship to getting a tradesperson round to the house.
Let's look again at the statistics around autism. We know that 80% of autistic people are defrauded by people they thought were friends. We know that 30% of autistic women disclose having been raped. The sensory situation for us is major, and the reality is that we are often blinded and deafened by the sensory world around us. Unable to see who is a predator. 80% of autistic people are sometimes non-verbal during stressful situations, so completely unable to speak up for ourselves in words during those moments. Perhaps unable to scream or shout for help.
Look up the words Sensory Autism Vimeo online and watch the two minute film, with the sound turned up. That's a reality for so many autistic people. It's not a manipulative or nasty behaviour. It's pain.
I get a certain number of Social Worker-trained individuals who do not realise that the entire landscape of autism understanding has changed in the last few years. If their knowledge is not up to date, (from actually-autistic specialists or teams where autistic people are equally valued as professionals) they cannot possibly be in a position to offer safeguarding expertise around autism.
I see them wading into situations where they are conversing with autistic people, and completely misunderstand the dynamic. They assume that the autistic person is communicating 'rudely' and so go on the offensive with them. They assume that the escalation that results means that they need to be more firm, exert more power. They are misreading the whole situation, because of their lack of knowledge. I see autistic people pushed into meltdown, shutdown and general not-coping by this escalation of ignorance. Then, we find people being Sectioned, or put into increasingly expensive care settings. Few situations were necessary. They are caused by the ignorance of others, in many cases.
I am very thankful to be working with groups across the country, and with the best of minds in the academic and research fields. People like me are brought in to assess academic materials for accuracy and appropriate language. We are hired to provide expertise to Psychologists, Psychiatrists and similar professionals. This is no longer a landscape of 'we visit autistic people in a care home and do things to them'. This is a collaborative partnership between equals. Am I something special? No, I'm one of many professionals doing such work, whilst preparing for the Masters degree. Be aware that we exist, and in increasing numbers. Make contact with such people.
I am extremely glad of that radical change in thinking over the last years, and the resulting improvements in autistic lives. The suicide and self-harm rates for autism are stratospheric because so few people have been trained on the communication and culture of autism, or the basic information about sensory processing for us.
Be allies. Find out.
Thank you for reading.
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