"How can you claim to speak for autistic people when you are nothing like my son? You can talk, study for degrees, get married, have a career... He'll never have any of those things."
Well, I don't claim to speak for all autistic people, and I don't actually know any of my colleagues in the autism writing/speaking community who do either. Although many have been accused.
Well, I don't claim to speak for all autistic people, and I don't actually know any of my colleagues in the autism writing/speaking community who do either. Although many have been accused.
This is for two main reasons:
1) There is a saying "If you've met one autistic person, you've met one autistic person".
No one knows this better than an autistic person. Frequently we get people saying things like "You're not autistic. Who diagnosed you? You're nothing like... [insert name of other autistic person]".
I was once told I couldn't be autistic as I was nothing like the autistic kids a person worked with in a Primary School Special Unit - I responded, "Well, I suspect few of your students are in their 50s and mothers of three".
When an autistic speaker or writer speaks about their autistic life we can only speak from our own experience. After all, it's the only experience we can be sure of.
2) As autistic people, we are detail-orientated, not generally 'big picture' thinkers. We know the difficulties we, as individuals have, and can talk about those difficulties. We may know that those difficulties are pretty common among autistic people, but we are not generalising. Generalising isn't really an autistic 'thing' - we'll leave that to the neurotypicals! 😙
So if I say "Autistic people often experience meltdowns..." that'll just be a fact I've encountered. It'll be based on research you can bet, although usually I don't give a reference because it is something that is spoken about so often in the literature, it's really not controversial.
If I say "Meltdowns feel like this..." that'll be from my personal experience.
There is a high chance that many autistic people may relate to what I'm saying - at a recent talk, I received high praise indeed from an autistic 11 year old, who, after my talk went up and said "Miss, Miss! That's just what it's like!"
So that's what I'm trying to do - not so much 'speak for' other autistics but using my own experiences to give a window into the mind of an autistic (mine). I'd love to be able to tell you what you're non-verbal, severely autistic child is thinking, but I can't do that. I'm autistic, not magic! It is my hope that by listening to or reading my experiences, you can see situations through different eyes which may give you an insight, some empathy into what life is like from an autistic looking out.
1) There is a saying "If you've met one autistic person, you've met one autistic person".
No one knows this better than an autistic person. Frequently we get people saying things like "You're not autistic. Who diagnosed you? You're nothing like... [insert name of other autistic person]".
I was once told I couldn't be autistic as I was nothing like the autistic kids a person worked with in a Primary School Special Unit - I responded, "Well, I suspect few of your students are in their 50s and mothers of three".
When an autistic speaker or writer speaks about their autistic life we can only speak from our own experience. After all, it's the only experience we can be sure of.
2) As autistic people, we are detail-orientated, not generally 'big picture' thinkers. We know the difficulties we, as individuals have, and can talk about those difficulties. We may know that those difficulties are pretty common among autistic people, but we are not generalising. Generalising isn't really an autistic 'thing' - we'll leave that to the neurotypicals! 😙
So if I say "Autistic people often experience meltdowns..." that'll just be a fact I've encountered. It'll be based on research you can bet, although usually I don't give a reference because it is something that is spoken about so often in the literature, it's really not controversial.
If I say "Meltdowns feel like this..." that'll be from my personal experience.
There is a high chance that many autistic people may relate to what I'm saying - at a recent talk, I received high praise indeed from an autistic 11 year old, who, after my talk went up and said "Miss, Miss! That's just what it's like!"
So that's what I'm trying to do - not so much 'speak for' other autistics but using my own experiences to give a window into the mind of an autistic (mine). I'd love to be able to tell you what you're non-verbal, severely autistic child is thinking, but I can't do that. I'm autistic, not magic! It is my hope that by listening to or reading my experiences, you can see situations through different eyes which may give you an insight, some empathy into what life is like from an autistic looking out.
Facts versus Experience
a. Social Communication
b. Sensory hyper and hypo sensitivities
c. Organisational problems (aka 'Executive Dysfunction').
The majority suffer chronic anxiety issues, meltdowns and shutdowns.
That's across the Spectrum (or at least I've never met an autistic who didn't). Some autistic people also experience speech and communication difficulties (about 25% are nonverbal - NAS) and 38-42% have intellectual impairment (aka 'Learning Disabilities' in UK - not to be confused with things like dyslexia, which are also common). Since many 'High Functioning'* autistic people remain undiagnosed (about 8 out of 10 some estimate) that figure is probably skewed towards the more severely autistic end.
When I began public speaking and writing, much of my work was like the above - bullet pointed lists and statistics. Its' how my autistic brain works - whilst the famous autistic woman, Temple Grandin wrote a book "Thinking in Pictures" my book would probably have to be called "Thinking in bullet-pointed lists and PowerPoints" (admittedly less catchy). In an attempt to generalise the information for my audience, so they could take it away and apply it to almost any autistic person they met, I bored them to tears.
So when I began this blog, I didn't do that. Instead, I made it very personal and very individual; Very specific. I wrote about my own lived experiences, and then tried to (where possible) tie it into more general autism 'truths' that might apply across the board.
Like many able autistic people, I have spent my life not really feeling listened to. I wasn't even diagnosed until my 30s! I write and speak with the hope that you will listen to me; but its not something I really need these days. I'm lucky - a lot of people listen to me. Many autistic people around you will not have had that experience. I don't know what it is like to be them, but I do know what it is like to not feel listened to, not feel heard.
When I've spoken in schools, kids have been overheard asking, afterwards, "What that lady said, is it like that for you?" Even if the answer is no, at least there has been a conversation. So, no, I can't speak for all autistic people. But I can at least introduce an autistic perspective, and get people thinking about these issues through a different lens.
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* I am not keen on the term 'High Functioning', which is often used, inaccurately to refer to an autistic person with an IQ above 80, and it is assumed that person will be able to function pretty much like a neurotypical with a few differences. This is not the case: some autistic people with intellectual impairments can live pretty independently, some autistic people with genius level IQs need 24/7 care-support. Many of us are high functioning most of the time, but a meltdown or shutdown can rob us of that functioning instantly. I prefer using the term 'Able autistic', but when speaking medically I use the problematic term. Any suggestions for widely understood alternative language, I'd be pleased to consider it.