I see this journey so often, in the encounters with others. In watching how they respond to my autistic family, friends, colleagues.
In this post, I'll talk about some (not all) of the typical encounters with me, as an autistic person who can appear entirely non-autistic. It's called 'masking'. A lifetime of being conditioned to put on an exhausting and demoralising outward appearance, to avoid acts of ostracism, hate or fear by others.
"I can do this!"
This is stage one of the encounter with me. "Ann is just like me. Perhaps she's just a bit shy, or a bit nervous. All she needs is a bit of encouragement, a few reassuring words, and she'll be as 'normal' as everyone else". Sometimes Stage One starts and ends with pity. "Oh the poor autistic person, we must treat them as a special angel and look after them..."
It is a well meaning start. Certainly better than some of the alternatives which have involved altogether scarier reactions. Yet, it's doomed to failure. It's only a matter of time before this well-meaning gambit fails. You see, I'm not like you, and that's OK. I run a different brain 'operating system'. My way of signalling happiness may look different to yours. My way of signalling distress looks different to yours. My way of communicating concern can come across as rude. Sooner or later, I run out of ways to mimic being-just-like-you, and will revert back to my natural body language, my natural lack of eye contact and flattened voice tone (which can sound rude or pedantic). Your brain is expecting me to be Just Like You, so it automatically registers this change as 'Ann is rude'. We now have all the ingredients we need for you to think I'm not interested in your friendship or fellowship, or are malicious, and we enter the second stage.
"No, Ann is Rude"
Still convinced that I'm perfectly capable of being just-like-you, you'll now convince yourself that it's my bad attitude that's at fault. "Ann is rude, Ann is nasty, Ann wants attention, Ann is trying to control people by saying she's exhausted or cannot cope with a sensory environment." I've had it all. It's why I and colleagues spend so much time training Psychiatrists and Psychologists on autism, and healthcare teams, and churches......, because it's so easy for people to entirely misunderstand a social diversity and think it's a 'personality disorder'. It's at least predictable, stage 2. But it's also deeply unfortunate. Because I'm not ever knowingly rude and nasty at all. To me, people are friends, and much loved by God.
Sometimes I'm afraid. Sometimes I'm so tired after a day of trying-to-cope that I cannot do more. Sometimes I'm reverting back to very normal autistic communication, which is factual, straightforward, without hidden meanings. But, once a powerful person decides I'm actually Rude, I'm scuppered, to use a nautical word. I will now find that I'm dropped as a friend, dropped as a colleague. I'll find that others are 'warned' about me, and that people compile careful lists that support their hypothesis of Rudeness, no matter how wrong that hypothesis is. People shun me, stare at me and walk past. It's scary, it's humiliating. It's awful.
Sometimes, this Stage 2 gets diverted into, "I can't do this", and the person trying to encounter me will simply run away.
Some make it to Stage 3.
"Ah, Ann is autistic, and that's OK"
You've no idea what a relief it is to find people who want to get to Stage 3. I'm blessed with a number of them. That dawning moment when they put down their List of Allegations, turn away from the conversations about 'How we should avoid that woman', and encounter the real me. Not the two their brain invented - the 'one-like-them', and the 'one-who-is-nasty'. But the real me. The one who treks for hours to help them, just because it matters to them. The one who prays with them in the darkest moments. The one who wants them to thrive. The one who cheers them on when they need it. The real person who is sometimes too tired to attend something, too exhausted to communicate well. The actual person who is sometimes very afraid and will run away from a situation that is too much to handle...but that doesn't mean hate. The person who is clear with them about what I need in order to function at all. Very little, but it's not negotiable. Autism isn't something I choose. It's hardwired in. A genuine difference, a diversity, and one that society disables with its blinding lighting and its deafening sound levels. My brain takes in too much, and will focus on different information to yours. Walking alongside one another, we can learn, we can laugh, we can love. We can complement each others' abilities.
If you are encountering any autistic person, watch out for finding yourself mired in Stage One and Stage Two. If that's where you are, perhaps take some time to do some reflecting. Because Stages One and Two are about you and your responses to difference, not about the autistic person you're encountering. We can't really help you through those...you have to take that deep breath and say, "Heck, I got that wrong - can we start again, please?" And -provided the behaviour of the person asking never got into dangerous territory [I've had death threats, threats of violence, etc] I'll say, "Yes, of course, my friend".
Because we're all on this planet together, and we all bring things of value to it. You are an important part of this world. So is everyone else. So are we.
Thank you for listening.
The picture shows part of a rainbow-coloured mosaic bowl in which some small cards have been placed. On them are words of kindness such as Gentle, Thoughtful, Love and Peace. Words which remind me of so many of my lovely autistic family, friends and colleagues...if allowed to live without pain and fear.
Great power brings the need for great responsibility.
Online, I and so many other autistic people have been watching a rich, powerful, well-connected, well publicised author trying to silence autistic voices of dissent.
The author has written a book which outlines her son's autistic behaviours. She describes him in ways many autistic people find humiliating, dehumanising, horrific. I don't use such words lightly. It describes how the mum in question intends to seek a vasectomy for her son, currently aged 15, to stop him having children in future. He is at school, talks, reads, has friends. The author had described another autistic person in terms that the person found distressing. When they complained about this, they were referred to as a brat. It was a moment of revelation as to the author's view of autistic adults.
When autistic people took to finding copies of the book (for a while available as a pdf online, since removed) - or reading copies in the library... or borrowing copies from one another - they started reviewing it online. The author didn't like this, it seems.
The author contacted a friend of theirs on a large bookselling site and it seems asked them to censor the comments. Then apparently asked her largely-rich, powerful group of online friends to target the autistic commentators by getting the review sites to remove their comments.
Let's think about this for a moment.
Autistic people are amongst the more impoverished on the planet. So many have no jobs, no spare income. Not so much as a spare £1. Society prevents most of us from working, such is the level of misunderstanding and hate out there.
In order to comment on whether we have a right to reproduce, and whether an author has the right to name and shame their own child in that debate and publish it...we have to now be able to afford to buy a book each, it seems. From a specific bookshop where the cheapest price seems to be £8. And review it in ways that please the author, or her mate will remove their review. £8.... That's possibly two days of food, for an autistic person. Maybe it's a whole weeks-worth of food.
This, my friends, is power.
The power to decide who is rich enough to review you.
The power to decide whose words are good enough to comment on something that affects their own future, their right to exist.
The power to decide that the pain, the shock, is 'trolling', nastiness, simply not liking autism parents and having nothing better to do than to attack people for no reason. The reality is that many of the reviewers are 'autism parents'. Autistic autism parents, specifically, with nothing whatsoever against 'autism parents' of any kind who safeguard their children.
I am so blessed with knowing hundred upon hundred of autistic parents. Fabulous they are, too. Kind, wise, careful, knowledgeable, capable. A few needed some support. A few people of all kinds need some support. Let's face it - nearly every parent needs some support.
Autism doesn't make someone a bad parent. No, it doesn't.
In fact, it can make them the best parent of all, especially perhaps to an autistic child, which statistically they are very likely to have. A parent with great insight into their child. A parent who has known what it's like to overcome obstacles and find ways round problems. Who can 'translate' the outside world to them. Who can model how to be autistic in authentic ways. Yes, some need more support. Yes, some people of all kinds need more support. Some of us not only did without support, as a parent, but offered support to a huge number of others. It's very wrong to assume we are always the 'burdens'.
If one partner isn't 100% reliable on contraceptives, the other partner can look after that side of things.
If one partner needs a bit more support with some things during parenthood, the other partner can help support that. And vice-versa.
A good number of autistic people are gay, so contraceptives may not be a part of their lives anyway.
Society makes autistic people suffer. And silences them from saying, "This hurts". Is that fair?
Society determines who can reproduce, and who is to be sterilised. We know this from the very eugenics programs that the author discussed in the book. (Oh yes, I've read every word of it). And we know that we have to believe in each others' humanity. In each others' soul. To have hope, to have love, to have caring.
I was a non-verbal autistic child, rocking in a corner, lining up things. No-one would have believed me capable of anything that I managed in later life. Not one bit of it. I'm still sometimes non-verbal. I do not live 'independently'. We have the most fantastic autistic son. We are so proud of him.
The author's son will spend his life with that book being a tool to deny him his future, I sense. Naming him, it's now a tool with which to bully him, and mock him. A tool with which to deny not only his humanity and his choices, but to encourage a whole lot of other people to do just that to even more autistic people. To not only describe us in humiliating ways, but to get a lot of people to silence us if we say, "This hurts".
The autistic people have the right to say this isn't OK.
It's not OK.
It's
Not
OK.
Learn love. It's better.
Thank you for listening.
The picture at the top shows a woman with her mouth taped shut. It represents silencing of voices.
Many of my autistic colleagues have spoken about how it feels to be talked about, online. Most have reported that some parents and carers get quite angry, in response.
"I have a right to say how it feels", they say. Perhaps in different words to that. "I have a right to say how it feels to have an autistic child. I have a right to say how I feel about autism. I have a right to say how it impacts our family".
Yes.
Yes, you do.
You have that right.
We also have a responsibility, which is to that young person in our lives.
I know you love your child. I know you want the best for them. I know that you are tired. I know that you don't have enough services and support. I know that you have to struggle to get good information, to get good training, to get enough money to keep things going.
I know you need to talk about it.
I am the parent of an autistic son. In early years, I needed to talk about it. We struggled. There were school changes involved. There was battling the system. There was tiredness. There was anxiety, as son would wrench away and run straight out in front of people, trolleys, traffic, with me racing to catch up. So much ....so much to talk about. I can talk about it online now in public, in ways that could identify him, as he's an adult and he's said that's OK. He gave consent.
But...where? Where is OK to talk about it? And what is it OK to say? Those are the things we're negotiating, in this conversation.
"My child will never understand what I say", say a number of parents. Except...we do. I was non-verbal I knew what was being said. Countless non-verbal autistic people online, explaining that yes, we hear.
"My child will never read", say a number of parents. Except, so many now use technology to do just that. Maybe not today. Maybe next year, the year after, in five years...
Your child hears what you say. One day, your child will read what you wrote. The online stuff is going to be there for a long, long time.
So, what will they hear? Especially as so many have hearing so good that they can hear from several rooms away... even if you are keeping your voice to a low level. Will they hear you say, "I am so tired, I wish we had more support as a family so that my fantastic child is able to cope better, and I'm less stressed out." Yes, that's true.
Or will they hear, "I hate autism. My child has destroyed my life. My child will never be able to talk, never be able to achieve, never get a job, never have a relationship, never have friends...".
If you were your child, which message would you like to hear about you? What message does it tell you about your worth, to your parent?
If your child learns to read, or has technology to do so, one day, and finds what you wrote online about them, using their name and picture, what will they read?
Will they read, "Why is this system such a struggle? How do I find the right things for our family? Who can lead us through this and help us understand?"
Or will they read, "Why is my child such a nightmare? What about the impact of my child on the rest of the family? Thank goodness I'm such a superhero, because we need to be superheroes to cope with A Child Like That, don't we. Those autistic adults are so nasty for saying we're hurting our own children for talking about them online in awful or humiliating ways, for all to see. They haven't a clue what we parents endure."
Will they go to a school, to find that the more able readers have read all about their toileting habits, and use that information to bully them? Will they go to start a job, in years to come, and find their employer has Googled their name and is now reading what Dad said about how this person destroyed their lives? Yes, you can't imagine that your child will ever be in work. People couldn't believe I was going to work, either.
Just some examples.We know that the autistic suicide rate is huge.
We know that so many autistic people are living with massive anxiety and depression.
We know that on average, we die 16 years before others, because our quality of life is made so bad.
That's not 'autism'. That's living in a world that is relentlessly hostile.
We need you to be on our side.
We need you to be there.
We need you to believe in us.
And it hurts. It hurts so much when what we hear is, "My child has destroyed me". Or words similar. "I hate autism", or words similar. Autism, you see, is us. It's who we are. There is no 'real child' hidden behind autism. It's us.
Those distress behaviours are distress, not 'autism'. Distress at real pain from the sensory environment. Distress at real pain from social overload. Distress at real pain from thinking we personally have caused our parents to hate us, just for being us. That our parents think we will never achieve anything. That all of our lives will be lonely and friendless and jobless. After all, why would our parent lie about that? It must be true...
A lifetime of those negative things, written for all to see....that's not good for any child. For autistic children, it can be devastating.
Your child hears you.
Love them. Find support quietly, safeguarding their identity from public vision until they can give you consent to release details. It's possible to write powerfully using a pen-name, not a real name. Listen to autistic adults, because lots of us have been the same as your child, in the past. No, really. Listen to lots of us, so you can get some useful things from each person. And when you're talking anywhere near your child, put the blame where it belongs: on a system that doesn't help you as a family. On a world that doesn't understand autism Help us change that system. Help us work with you, so that your child succeeds.
Love them.
Protect them from public and peer scorn and missed opportunity in later life.
For you are their anchor in this storm.
Thank you for listening.
The picture shows a young girl in a yellow dress, communicating with a peaceful dapple grey horse. Just because it's a lovely photo. And because a life around horses, dogs and cats taught me a lot about how to communicate, and how to begin to use language. But that's another story...
I read the NHS research project paper for Applied Behaviour Analysis (ABA). "Intensive behavioural interventions based on applied behaviour
analysis (ABA) for young children with Autism spectrum
disorder: A systematic review and cost-effectiveness analysis" is the title of the project.
The project (2017) was going to find out whether more widespread ABA would reduce the cost of autism for society. Summarised. It claimed that this cost is £32 billion for the UK. £1.5 million per person, it says. It links to the paper here by Knapp et al, 2009. I've put one of the bizarre financial tables from it above. Apparently autistic adults with an average or higher IQ cost society £14,000 a year in 'hospital costs' and nearly £20,000 a year in 'lost employment'.
I would say, "You just can't make this nonsense up!", but apparently someone can, and did.
In 2009, we had almost no idea how many people in the UK are autistic.
In 2017, we still didn't know how many people in the UK are autistic.
Somehow, though, we 'just know' the cost to society.
Really?
In 2009, we had identified almost none of the autistic females.
In 2009, we had identified very few older adults who had missed diagnosis when younger.
In 2009, we had identified almost no autistic People of Colour, mistaking autistic behaviours for cultural ones in many instances.
In 2009, we had identified almost none of the extravert autistic people, imagining that it was a condition involving extreme introversion and a fondness for libraries.
In 2009, we thought that around half of autistic people had a learning disability. They don't. Few do. http://bjp.rcpsych.org/content/bjprcpsych/early/2016/06/27/bjp.bp.115.174649.full.pdf refers.
We have no clear idea how many are actually employed, because we force so many employed autistic people to hide. They're not in any research paper. Recent surveys suggest the gap between autistic employment statistics and those of other people isn't very great at all. But it's been made out to be huge. In fact, some seem to be claiming that all 2 million of us do not work. How very strange.
7 out of 10 have tried their hardest to work.
Do you know what the barriers nearly always are? It's the employers, non-autistic staff, and the people who build and maintain the buildings.
It's not 'the autism'.
If I go to an interview, I'm expected to pass a social skills test. The interview. Designed to fail me at the start, in other words, as I use a different form of social communication.
If I am then employed, I am almost certainly expected to socialise and work exactly like a non-autistic person, even if it destroys my creativity and ability to concentrate (i.e. the very things the job needs). My appraisals will most likely say that I am rude and unco-operative, even though I'm not. Just socialising differently.
If I manage to stay in the building, I'm expected to work under flickering fluorescent lighting (because it would cost 'too much' to replace one bulb with another, allegedly). I'm expected to be deafened by noise, also. Perhaps nauseated by intense smell. Asking for any form of accommodation is seem as 'a cost', even if the end result is huge productivity and profit from me.
These are the usual barriers to economic success. None of them are 'my autism'. Then we add in the new research showing that nearly all autistic people are bullied at work. Mmm.
I co-run two businesses and a charity. Many autistic people I know are employed, many in the professions of law, accounting, surveying, healthcare, etc. Some are not. All are valued. All contribute, whether financially or vocationally, or as friends and fellow travellers on life's journey.
For those who cannot work, we absolutely do need good support, for them and for those that may care for them. Proper funding. Really good outcomes. I and others strive for this in so much that we do, ensuring that each autistic individuals is able to lead a good life, with carers who are supported rather than exhausted.
We need to stop describing autistic people as a 'burden' to society. Mindful of the recent research into the very high suicide rates for autistic people, and the emerging data around how constant negativity about us may cause this.
We especially need to stop making up figures to prove this alleged burden.
Think differently. Learn from us. We're fantastic people. Why not try getting to know us instead?
Thank you for listening.
The picture shows piles of money, and a red arrow pointing upwards.
"But my autistic child has to learn to speak using words. It's how to ask for things and it's important for a successful life." I hear this kind of thinking, a lot.
Most autistic children use spoken language. Either at the usual point in their young lives, or later on. Some do not.
There's a myth that forcing us to use the spoken language and social signalling of non-autistic people is 'better'. That it will lead to better outcomes. That it will lead to greater respect, more independence.
I'm not so sure. If that's the reality, how come so few of us are employed, and have such bad outcomes? We are finding that supposedly 'fixed' autistic people have the highest stress, the least support, the most chance of suicide. The outcomes are often worse, not better.
I grew up as a mostly-non-verbal child. I could use repeated phrases, without knowing what they meant. I could write words, then eventually sentences, eventually whole stories...but I couldn't really speak. I'd go to speak, and nothing happened. The words would be carefully arranged in my brain, each one thought about and matched up to my brain's picture-imaging. And to my brain's remembering how it sounded when someone else made those noises. I only think in pictures, not words, y'see. But...I'd go to speak them, and all sorts of hell would happen.
Maybe I couldn't speak them at all, and was left floundering like a gasping goldfish, moving my mouth but nothing happening (result - hilarity from onlookers).
Or, I could speak some words, but not the whole thing (result - hilarity from onlookers).
Or, I could speak all the words, in the wrong tone of voice. (Result, chaos or hilarity, or people thinking I was some pedantic professor-type or someone very Posh).
Or, I could speak the words, but in the wrong order or with some mispronounced as nonsense. (Result, chaos or hilarity or people totally misunderstanding me and getting really angry).
Or, I could speak the words, in the right order, but at the wrong time. The conversation has moved on. Result - chaos, misunderstanding, or hilarity.
Or, I could speak the words, in the right order, at the right time, without making the right eye contact and face expressions. That requires micro-second accurate automated control from the brain. Otherwise you do a good impression of a slightly stary scary robot. See 'uncanny valley' articles aplenty on this. Look it up. Yes, that's what we're training autistic people to resemble. Not good. Result - people feel uncomfortable and a bit freaked out, and edge away from me.
Or, I could speak the words, and come out with a sentence that insulted everyone in the group, quite accidentally. Their understanding of what was important in that sentence...and mine...were different. I didn't know the rules.
I'm still sometimes non-verbal. I run a company. I can run a company AND still sometimes be non-verbal. Shocking, isn't it. Arguably, I could run this company without saying a verbal word to anyone at all, if I so wished. I do some speaking because I enjoy having a go at it. But my brain can only do so much, before it hits 'can't do this any more'.
You can see me writing on here, yes? I can say what I mean, in writing. More or less. Goodness me, I can get misunderstood even in writing - autistic culture is one of accurate info, short or no social chit-chat, and adding more and more data until people understand. All of that can be a cultural misunderstanding of epic proportions, of course. But, in writing, I can usually 'speak'. If I am out of ways to write legibly, I am in deep crisis. I've been pushed into that by intense and relentless mockery and bullying online, on some occasions. Horrifying stuff to experience. (Yes, online, we need to make sure autistic young people are as safe as possible. But that's true for every part of life, not just online.)
I can ask for things, in writing.
I can explain things, in writing.
I can meet people, in writing. Real people, online. Real people who are able to say real things to me, in writing.
I can then choose to meet safe and lovely people in person, by setting things up, in writing. And meeting them in ways that I can cope with.
But, if I am asked to negotiate even the simplest contract using just spoken words, I'm often stuck. That combination of being slightly-out-of-synch with body language and word phrasing means mostly I end up being taken advantage of, in negotiations. In writing, I can hold my ground on fairly equal terms.
So...I work with others who can speak hugely well. They can be my voice. And my 'verbal bouncers' for people who try to take advantage, assuming that speech hesitancy equals cluelessness about business. We have amazing lawyers and other professionals who work with us, checking what's what. My autistic brain is fab at detecting things-that-don't-make-sense in writing and figures. Better than most others, in fact. Not boasting, just saying how it's possible to run one of the companies in the UK that has a fantastic reputation for professionalism....whilst autistic. Because, together, we are a team. Together, we make it work.
I can train others, speaking in front of huge crowds, on subjects I know. It takes me days to prepare, and days to recover. People see the very verbal Ann and think it's easy. It's hell, using words. No, it is. It's so exhausting. It's why our team and supporters at the events keep people away from us in the breaks...we literally cannot speak all day long without a break.
Such a relief to be with my loved autistic family, friends and colleagues who allow me to speak in ways that I can cope with.
I see a lot of autistic people who are forced to use communication systems that just exhaust them, year after year. A bit like insisting that a wheelchair user must stand up each time you enter a room, to show you respect. Time after time. "If they don't show respect to you, and to everyone they meet, by standing up each time, then people won't respect them. I'll get someone to train them to stand up, no matter what pain or exhaustion results each time. This is good for their future". It's similar to that. With acknowledgement to wheelchair user friends that quite often that kind of thinking is exactly what they get, too. It's also like forcing Deaf children to speak, and not allowing sign language and other communication methods. Again, the Deaf communities have had plenty of that kind of behaviour forced on them.
How about we teach that it's OK to show respect in words. Or pictures. Or sign language. Or any other form of good assistive communication? That it's OK to make friends using written words. That it's OK to ask for things using something that isn't words.
How about we teach that it's OK to be autistic ...and that everything we do doesn't have have to mirror your way?
If parents and carers want good outcomes for their children, they need to build on their strengths, not exhaust them and force them to be something they're not.
I show respect and love differently. And different is OK.
Thank you for listening.
The picture at the top shows three children gathered round a computer tablet, using it to communicate.
I see a lot of venues starting to offer, "Autism-Friendly" events.
Some are very good. For example, perhaps they think about holding the event in a quieter location, using non-flickering lighting. Maybe they think about offering a quiet 'escape space' for those needing downtime. They have staff who are trained on modern understanding of autism, and are relaxed and enabling with people. They do not hold the event in a room filled with decor closely resembling an explosion in a paint-and-pattern factory, with jet-engine-noise from air conditioning and bathroom hand driers....with no way to get away from that chaos. They don't have to make every inch of the venue noisy for each and every one of us attending.
They can think about advertising in ways that most autistic people can access. They provide enough advance info, plans, photos etc to give confidence about sensory hazards that still exist - and how to avoid them.
But, some events advertise themselves as (for example) "Autism Friendly Performance for You and your Children With Autism. We won't mind if you child runs around making lots of noise".
Some puzzlement about the phrase, 'Children with autism'...I mean, do they bring the autism with them in a separate bag? Are they children with whiteness, or children with Blackness? What about children with maleness or femaleness? Most autistic people like to be called autistic people, although one needs to respect individual differences of opinion, of course. Be aware of autistic preferred language when advertising generally, and be ready to adapt that for individuals.
The thing is, though, most autistic people aren't children. Most of us are adults. Most of us do not run round things, making lots of noise. A good number of us are very very quiet and well behaved indeed. Many are professionals, many are older or elderly. Many are middle aged mums, like me, fitting in events around our jobs and family lives.
The picture shows how a busy, noisy event looks to my particular autistic sight. So difficult to navigate and make sense of. A chaos of colour and pattern. I am blinded and deafened. Exhausting.
What a good number of venues mean is, "We will turn the lights and volume down a bit, and let young children run around wildly for the whole time they're here, making as much noise as they like...and we'll guard the exits".
There are occasions when that is important. A number of events are specifically for lively children who also need a lot of safety as a result, of course. But, some other types of venues also think this is what 'generally autism friendly' means. No. If anything, it is a peril for many autistic people. For example autistic young people and children who need quiet, and find lots of racing-about to be very overwhelming and frightening.
Also, autistic adults who need quiet, and aren't able to cope well with a load of children screeching and sprinting around them.
Autistic adults or children who have mobility difficulties, and who may be knocked flying by fast-moving autistic children.
This is why it is important for autistic people to have access to a range of events, and for safety to be thought through for everyone.
Not least because many autistic adults wish to attend all sorts of events. Events showcasing art, sculpture, ballet. Concerts. Religious services. Shops. Restaurants. Theatres. Exhibitions. Consultations. Meetings. Lectures. In fact, every single event and venue that everyone else gets to go to.
No, we don't need a separate autism-event for each of these.
We may need advance information of what's ahead. We need that information to show us the main sensory hazard areas, and the quiet area to get away from those. Get autistic people to help spot the sensory hazards in your venue. Photos and plans on a website are great. We need to know that the staff aren't going to think we're rude for not making eye contact, or being unable to speak using clear language. That's good basic autism knowledge and information. Those sorts of things enable so many of us to access things all day, every day.
And...it enables everyone else to feel comfortable too. People who are nervous. People who are shy. People who are exhausted. People who are new to the venue. People who don't have English as a first language. Everyone knows what's ahead.
It helps venues get the business of an extra million-plus autistic customers in the UK. Plus their families and friends, their colleagues and allies.
Most autism access is very easy.
So, yes please to having places where parents don't have to worry about their children exploring and making noise. That's important. But please don't mistake that for your organisation ticking all the boxes for 'autism friendly'.
Most of us are not children. The rest of us would love to attend your fabulous events and venues, too.
We have seen recent media reports claiming that half of autistic children are violent.
Let's explore where that statistic came from.
In 2011, a study was done. This was heavily promoted by the big anti-autism group in the USA. That group promote anti-autism therapies, at huge cost. These are paid for by insurance companies, who need to know that there is a terrible risk to not 'treating' the children.
The researchers asked for non-autistic parents with just one autistic child to participate. There must also be other non-autistic children in the family. In other words, the autistic child had no-one in the family unit with whom they could communicate naturally. A source of stress and misunderstanding for the child.
The family were asked about the violence from their child, now or 'ever'. This included 'rough play', 'ever'. Or pushing someone, ever. They found that, by including bizarre criteria like this, they could pretend that half of the children were 'violent'.
Do you know what the statistic is for non-autistic children playing roughly or ever being 'violent'? About half.
So, it's not actually any different.
We also know that autism in itself doesn't cause violence. Links have been found to a combination of (for example) autism and some forms of ADHD. Only the combination proved reliable, not autism.
Autistic people of any age are no more likely to be violent than anyone else.
I do wish we lived in a world that provided correct support for families whose child - whether autistic or not - is violent. I also wish we would stop 'demonising' autistic people.
Thank you for listening.
I love the National Health Service. It has lots of fantastic people in it. Dedication, expertise, caring aplenty. It does a lot with limited time, limited staff and limited budgets. It helped save my life, on more than one occasion.
We know that a lot of autistic people die horribly early. Around 16 years too soon. A big part of this is not being able to access healthcare.
Let's look at yesterday, for a member of my family, as an example of how autistic people can become so exhausted that they stop asking for help.
P has a sore eye. He's autistic - and that is marked clearly on his healthcare records at the GP and the hospital.
The eye had fixed itself with a simple antibiotic. But it had flared up again after we stopped treatment after the five days. So, he went to his GP. His own GP wasn't available. Another GP saw him, briefly, and said, "Oh, eye problem? I don't know about eyes. Go to Eye Casualty at the hospital, straight away". End of instructions. No time to get our autism Hospital Passport paperwork.
We drove to the hospital. We parked. We walked and walked. It's a mega-hospital. A huge site. We figured out how to get to Eye Casualty. Under the fluorescent lighting, with the stench of hospital smells, the deafening noise, the blinding reflective surfaces. Endless corridors, endless baffling signs. The photo above shows how I process medical environments, compared to others. Overwhelming.
We got to Eye Casualty and attempted to explain. "We've just closed", they said. "You'll have to go to Accident & Emergency".
We attempted to find A&E. A nice person helped us. Out into the street, along the road, into the building. To Pre-booking Reception. We had to explain to them, at length. They took notes.
They sent us to Actual Reception. We had to explain to them, at length. They took notes.
They sent to us the Triage Nurse. We had to explain to them, at length. They took notes.
In between all of this, sitting in a busy, noisy area under fluorescent lights.
They sent us to the Nurse Practitioner. We had to explain to them, at length. They took notes. "We don't know about eyes - we're not eye specialists", the Nurse said. They did some basic checks to make sure it wasn't an injury. It wasn't. We already knew that. Ever such nice people at every point...but...
They told us to go to Eye Casualty Department, tomorrow. But first, we have to phone to explain.
Today, we phoned, to explain. No answer. Left a message, explaining. Again. (No notes ever transfer between people or departments, it seems. It's always a surprise to each new person).
Then, we phoned again, to explain. They took notes. They can't see us at all today as they are too busy, but they may see us tomorrow. Or Thursday. Or perhaps Friday. An appointment is made. Our usual GP now won't see us, because we're in the Eye Clinic System and that has to run its course.
We were shaking with exhaustion by the time we were home from hospital.
For autistic people, this is the equivalent of a 25 mile marathon, it really is. And for absolutely no outcome. No-one we saw, in all of that list, was able or qualified to offer any diagnosis or treatment. (I believe that one prescription is required, but I am of course not a Doctor)
I am so thankful that I was able to advocate for my family member, and help them through this, but now both of us are pretty much wrecked for the day. And tomorrow, it has to be done again. As working people, it will have cost us three working days in total. The changes of routine, the uncertainty, the pain of being examined. It takes its toll.
The NHS is wonderful. But we are deeply afraid of it, because it asks the impossible of us. I'm sure it doesn't mean to. I'm sure all of this is for good reasons, but no-one explains what those reasons might be.
Does it take days and nine stages to reach one person to look at one eye in a meaningful way?
How can we work together to improve all of this for autistic people?
In last night's otherwise-fabulous Chris Packham television documentary about autism, a Head Teacher of a large and well funded Applied Behaviour Analysis school in the USA was interviewed. The Head Teacher told us that ABA is 'educational chemotherapy' for autistic children. Vital to ensure their survival.
I, and a very large number of my national autistic colleagues, sat in stunned silence. The therapies shown involved hour after hour of exhausting training for the children, ignoring signs of distress. I've blogged before on ABA and why I and many others are not keen on it. No, not even the 'nice' sort that bribes the children endlessly to comply with non-autistic culture and communication. But especially not the sort that regards us as cancer.
I have a particular perspective on the words of the ABA Head. I am autistic. For some years, functionally non-verbal.
In 2011 I was diagnosed with an aggressive form of cancer. I was given four sorts of chemotherapy. And radiotherapy. And surgery. And wonder-drugs. And further surgery when the radiotherapy caused further difficulties.
It worked. The chemo worked. So far....
Great.
But...the net effect of all of that was appalling. Ignoring the nausea, the hair loss, the exhaustion. at the time.. I live with a huge amount of damage caused by the treatments. Damage to nerves. Scars. PTSD type stuff around anything medical now. Damage to veins. Constant pain. We are seeing a lot of chemo patients with heart disease, with all manner of other long term conditions caused by chemo. There are days when I wonder if it was worth it. Truly. Yes, even though I love my family and friends.
The chemotherapy and other treatments were offered because otherwise, I would have died.
They were offered because we had no other choice if I wanted to stay alive.
None.
To compare autism to cancer is appalling. I want to say that first of all. I am not a cancer.
Your child is not a cancer.
To suggest that our autistic lives are so terrible that we must be treated appallingly for years 'as our only chance' is not only wrong, but damaging beyond words. Humiliating. Damaging to self-advocacy. A risk to safeguarding, teaching children to comply at all costs. Teaching them that their natural behaviour and natural ways of communicating are irrelevant. Yes, a small number seem to benefit. The ones that don't are removed, quietly, from the schools and the studies. Oh yes they are.
Yes, some behavioural specialists are kind, and considerate, and don't use ABA on the children at all. They use stuff that is a long, long way from actual ABA, but call it ABA because it gets insured, that way. I'm not talking about things-that-are-not-ABA. I'm talking about actual ABA. I hope that's clear.
And, to that Head Teacher, supervising the teams for those children screaming in distress, comparing them to a cancer - goodness me, I have no words.
Parents, there are endless respectful, lovely therapies and techniques out there. Truly there are. ABA is not the 'only cure'. In fact, it's not a cure at all. I've seen the research that shows that children who appear to 'lose their diagnosis' after ABA in fact revert back to autistic behaviours later on. Of course they do. They're autistic. They were trained to pretend. Exhausting, dispiriting.
"But all children need to learn skills". Yes. So find a respectful therapy that teaches those. Basic parenting skills around autism. Occupational therapy. Autistic trained specialists who will happily teach your child. All sorts of possibilities.
"But my child injures themselves - do you want that to continue?" Of course not. Find a respectful therapy that works out why they are doing it, and works with them to find a solution. Plenty out there.
This isn't chemotherapy. And, if it was, you certainly wouldn't want to be giving it to a child when kinder treatments are available, would you?
If you are booking your child into ABA therapies..or any other therapy... take a good long look at your motives. Ask really, really good questions about which 'behaviours' they are training out of your child. And how. Really ask. You can find a good, respectful, kind, caring therapist who believes in your child... believes in their humanity and their need to be an actual autistic child. Lets your child be a child, playing autistically and having fun autistically, without every single moment of their lives being manipulated to 'teach them' to be some other child.
Look for places that have autistic leaders. Autistic trainers. No, not 'trained autistic zoo exhibits' that stand up and tell you how fab the school is. That's something different. Actual autistic people working in positions of authority and influence, in that setting. Can't find them? Be concerned. This is the future of your child they're modelling. Why aren't they using 'out and proud' autistic people as paid managers in that school? As teachers?
Avoid anything that describes itself as 'chemotherapy' for your child. They deserve better than being compared to a cancer.
Good luck out there.
The Festive Event. A tale of my past, as an autistic non-verbal child.
So many autistic children dread Christmas/other equivalent faith celebrations. Absolutely dread it. Not all. Some love it, because they love the overwhelmingness of it...but even then, watch many having meltdown after meltdown after that chaos. What I write here is a generalisation. Each autistic child is different. Always ask what works for us.
Everything changes. In the last few weeks of term at school, everything changes. School plays to rehearse for. Christmas decorations to cope with. Timetable changes. The horrible 'you're not picked for any of the parts in the play but we'll let you hold a balloon whilst dressed as an elf' stuff. Changing into and out of searingly-painful costumes for dress rehearsals. Coping under bright lights and intense scrutiny. Trying to understand vague instructions.
Trying not to feel any smaller than I already feel.
Then, we go home, and home's different too. The adults are stressed about the celebration preparations. The house fills with people, all of whom want socialising-with, and who will be offended when I can't. Or when I get it wrong. The decorations are so bright, so intense. Sort of fascinating and beautiful if it's just me and the decorations. Overwhelming when the room fills with people. The nightmare of trying to speak to say the Right Thank Yous to people. Otherwise, offence from them. Anger. The dread of opening random presents, unsure what sensory or social consequences will occur.
The programmes on TV change, too. The daily routines at home change. There are new smells, new textures, new items everywhere.
"Let's go to a Fun Event everyone", someone says.
Out we go. I know not where. Into the crowd, the noise, the sensory hell of the event. In front of me, perhaps keen but clueless non-autistic 'helpers' who will make lots of eye contact with me and sound really bright and cheerful. This pleases the parents and the people paying for the event. "We want bright, cheery people in the room, after all".
I have no idea what the event was. I'm deep in survival. With any luck, no-one will pick on me and make me do a something for the cameras, a game, a 'fun activity' with lots of social rules. Oh, they do. I feel sick. I can't process what's happening, fast enough. I get it wrong. The other children soon learn to play separately and abandon me.
Smile, Ann. Smile. Smile as though your life depends on it. Smile and behave. Smile and force yourself to make eye contact and wear the painful scratchy jumper given by Aunt D. She spent ages knitting the jumper and you Must Not Offend Her. Even though you feel sick with the pain and overwhelmingness from it. Count for as long as you can count. If you count to ten thousand, maybe it will be time to go home. Maybe it will be time to go to bed, where in the quiet and dark, I can be me. Smile, Ann. Smile for the cameras.
I was that child.
I smiled. I complied. I buried the pain.
https://www.theguardian.com/technology/2017/oct/07/the-party-a-virtual-experience-of-autism-360-video Is a useful video of one autistic young person's experiences at a party. Needs sound as well.
Jesus was not born in order to torture autistic children into pretending to be happy.
So, what can we do to help autistic children at Christmas or other big party and faith celebration occasions of any other sort?
We can plan ahead, including them in explaining what will happen and when. Allowing them space to process it all, including a quiet place to go when it is too much. Using visual support, if needed. Perhaps a 'test run' to a venue, so we can imagine something of its layout and soundscape before the main event.
We perhaps could be firm about saying to random relatives and friends, "No, you can't just turn up to the house with a horde of others at short notice, demanding that my child be present throughout - because it will cause immense distress for my child, thank you so much".
We can help that child to express what would work best for them, and listen, and think.
If there are non-autistic children to consider also, then respect the 'safe space' of the autistic child. Let them go to a safe bedroom or quiet room. Or use a pop up tent, headphones etc to give them a sensory space. Let them enjoy the things they can enjoy, without enforcing non-autistic social norms on them.
Don't expect Perfect Social Manners. We may signal happiness in totally different ways to you. Failing to make eye contact or give everyone a hug is not rude, in autistic communications. It's respectful. Frankly, no-one should be forcing children to hug or kiss people if they don't feel comfortable doing so. Body autonomy is a vital part of safety, in life.
For outside events, plan ahead. Ask. Be prepared for us to bail out into quiet space when it's needed. No quiet space set aside for us? Don't go. Or, take your own quiet space (that tent, those headphones etc).
Make it clear that it's always always OK for that child to stay safely in their own boundaries. Think about taking a safe toy or activity. Don't get angry if we want to stay with a safe person rather than join in with the chaos.
Then, we can start to relax and enjoy.
I see a lot of autistic children in the festive season. I recognise the desperation. Both from the children, who are having to work hugely hard in baffling new circumstances. And from the adults, who can't understand why their child isn't happy. Or appears happy at the event, and then has meltdowns or shutdowns for days afterwards, during recovery.
And it's why I and others do the work we do, in ensuring that events and venues are as doable as humanly possible for autistic people of all ages.
I still dread parties. I love being with people. I care deeply about people. I can't hear, or see, in a party. It's terrifying. So I will turn up and stay for only as long as I can manage. That's OK. And, if you are friends with an autistic person, tell them that's OK. That's what we need to hear.
Thank you for listening.
The photo shows a red bench, in the middle of a snowy woodland. For me, that would be a perfect Christmas season venue. Beautiful, peaceful, glorious. I could sit side by side with a trusted person or two, just communicating the sheer joy of their company and the view. Sharing time and space together.
With the kind permission of our fabulous son, Chris (featured in the photo, a couple of years back), a little about life as a parent of an autistic young person.
Actually, as an autistic parent, of an autistic PDA young person. Although he's a young adult, now, working as a fellow autism specialist.
On this journey, there have been some fantastic people. I thank them all. What I am about to describe is a selection of the situations so many of us have experienced, though.
Things we've worked through together as a family...a tiny sample...
Non-autistic parents sneering at Chris's social behaviour, and judging us as parents.
Having to teach Chris traffic skills, when he used to dash out in front of passing traffic if we didn't keep 100% focus.
Pulling him out of a pond, where he'd nearly drowned, unaware that it was water.
The hell for us both, in sensory environments that brought the pair of us to our knees.
18 hr days where it was absolutely non-stop with him.
Battling schools who described him as 'just not very intelligent' and writing off his chances.
Having to fight the education system time after time, changing schools twice as a result.
Him being berated by some teachers for not being able to match up to their expectations, when in sensory hell.
Watching some non-autistic friends abandoning him because he couldn't do their social events.
Watching some non-autistic people targeting him for insults and abuse. [Not that wise, when someone's a rugby prop, but that's another story...]
Me as an autistic parent, struggling to cope, without outside support, in the early years.
Me as an autistic parent, struggling to cope, without outside support, through chemotherapy and other treatments for aggressive breast cancer. Me as an autistic parent who has a number of other disabilities and differences, including arthritis, faceblindness and spinal scoliosis.
Me as an autistic parent being told by some autism hate groups that I have no clue about autism and should just shut up. But not as politely as that.
Me, and the whole family, living through two recessions that very nearly sank us, financially.
Chris working through the sensory hell of keratoconus and related eye surgery, and all of the difficulties with light processing that he has had since.
The assumption that because I can talk 2/3 of the time, that I can advocate always, confidently, and 100% accurately. On demand. In any sensory and social environment, any time of day.
The assumption that because I am hoping for a world that loves and accepts autistic people, I cannot possibly know about Real Autism, and Real Autism Parenting.
These and so many other things.
I'll tell you something - that Chris is such a blessing to us. He is absolutely fantastic and has brought so much to our lives. He is hugely loved. There is nothing about him that I would change.
I've watched him overcome huge odds, time after time.
I've listened as a minority of parents sit down in front of me to talk about how their own offspring have entered the finest possible Universities, gained the finest possible Degrees...and then quite literally sneered at Chris's achievements. It's odd; we couldn't be more proud of our son and all he has overcome.
Goodness me, we've lived through stuff. Together. As a family. Every misconception, every setback, every item of hate.
I would like a world where autistic people don't have to fight for every single thing.
I'd like a world where parents of autistic people are not left exhausted and unsupported through the most dire situations.
I'd like a world where autistic people are valued, loved and enabled to thrive.
For those things, I work hard, like so many other autistic people. Am I anything special in all of this? No, just one of many.
i'd like every young autistic person to be valued by society. Whether verbal or not. Whether of high, low or medium IQ. Whether of any background, ethnicity, faith or nationality. Of any gender and sexuality. Of any set of other disabilities and conditions. Each and every single one.
If you would like that too, join me and so many other autistic people, sharing the past and present, so that we can turn it into a better future. Not for pity. Not for attention. Not for manipulation. But because that future is not going to improve unless we acknowledge what needs to change.
Be the change.
Thank you.
