My state government has started what it calls a "living" policy on disability. Every year they are asking disabled people for input in to current policies and wether or not they are helping, and for input and suggestions on how things could be done better. Because it's such a hot topic in Australia at the moment they included a special clause asking autistic people for more input.
My submission is below, I haven't sent it yet. I don't think I'll end up changing anything but I'd be curious to hear other people's thoughts on it. The reason I haven't answered all questions is because they specifically ask us to only respond to questions that we feel we have relevant answers for. It's rather a long submission so it has to be spread over a couple of posts - because of this forum's word count limit.
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Dear DHS,
I wish to submit my input in to the State Disability Inclusion Plan Discussion Paper.
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I am autistic. A high function ASD2.
I live in Mitchell Park, SA. 5043
I am 58 years old.
I am a standard heterosexual male.
I am on a disability pension and I live in social housing after spending many years homeless and unemployed.
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Question 1: Reflecting on your own experiences, what barriers have you experienced as a person with a disability?
This is a complex question for someone with autism, the barriers are many and for very different reasons.
Sensory issues restrict access to public entertainment and hospitality venues as well as necessary services such as shopping, public transport, and health services.
Due to information processing issues, neurotypical body language and facial expressions often do not come naturally to us and this causes huge problems with access to medical services. We are misunderstood, disbelieved and misdiagnosed so often that we lose faith in medical services. Once again due to information processing issues, we are blind to many social cues and this often causes friction in work places.
This is an area in which we are not able to change, it is something we are not capable of learning, it’s the equivalent of trying to teach a blind man to read street signs and then getting frustrated with him when he can’t do it. We do not have a psychological problem, we have a physically different neurological structure that is more capable than yours in some areas and less capable in others.
This is where most mental health services also not only fail autistic people, but actually exacerbate their problems and make life much more difficult for them. Many are convinced that we can learn to “be normal” if we just try a little harder, and as practitioners present themselves as certified professionals who are supposed to be experts in their field many autistic people are inclined to believe what they’re being told and don’t understand why they can’t make any “progress”.
Health providers and especially GPs need to be better educated about autism. Especially important is that GPs understand that they must stop prescribing SSRIs to people that they suspect might be autistic. Our problems derive from a physically different neurological structure and these drugs do not work in the same way with us as they do with most people. For many of us these drugs trigger life changing events that we never recover from and we spend the rest of our lives as dependants.
------
Question 2: On a scale of 1 to 5, how accessible is your community for you or people with disability?
3 – Partly accessible
Reason: Audio sensory overload. Noise. Modern fashion in building décor is for reflective surfaces on floors, walls and ceilings. These surfaces also reflect and in some cases amplify sound to the point that some buildings are inaccessible to me even with hearing protection.
A classic example of this is the Marion Cultural Centre on Diagonal Road at Oaklands Park. The noise inside this building is only from people in the cafeteria talking but it is reflected and amplified to the point that it is unbearably painful for me to remain inside that building for more than a few minutes.
The Westfield shopping centre and the medical centre there also have the same problem. The Westfield shopping centre has a couple of additional problems. Stores playing music louder and louder trying to drown each other out, that really needs to be regulated and better supervised.
Another restriction to accessibility to that shopping centre for autistic people is smell. This is a big one, far more important than a lot of you seem to realise. Stores should be banned from burning scented oils, the scent extends far outside of their own store and pollutes a large area of the shopping centre. The scent is so painfully strong that it triggers headaches and makes us feel ill, as well as being a known source of carcinogens.
------
Question 3: On a scale of 1 to 5, how inclusive is your community for you or people with disability?
3 – Partly inclusive
Poor awareness and understanding of autistic issues restricts our access to a lot of public social events. Attempts have been made at making things more inclusive for us but our needs are often misunderstood and misinterpreted. This is directly due to the fact that nearly all autism research is focused on autistic children and parents of autistic children and the autistic adult world is very different from that of a child.
A perfect example of this was at the recent National Autism Strategy seminars held in the Adelaide Convention Centre. Organisers understood that many of us have an issue with lighting but did not understand exactly what that issue is. As a result they turned the lights down so dim that it was dark and spooky and scary in there and we couldn’t see to read any of the literature and nor could we see to write any of our responses to questions.
What we have a problem with is flickering lights. This means Fluorescent lighting. Most of you can’t see any flickering if it’s faster than 50 hertz, this is why most computer screens have a refresh rate of 60 hertz, to you it looks like it’s just a constant light. Many of us with autism can see that flickering up to around 90 hertz, to us a standard fluorescent tube is flickering like a strobe light, it’s very annoying and trying to ignore it is tiring and wearisome. Warm whites are much more gentle on our eyes than cool whites as well.
The Adelaide Convention Centre has theatre lighting – incandescent globes with adjustable power. This type of lighting is not subject to the flickering that we are sensitive to, and it is also a warm and comfortable lighting. It should have been turned up much brighter than it was, it would have made the seminars a lot more inviting and welcoming.
Public buildings should replace their fluorescent lighting with LED lighting. LEDs do not have the same flicker that fluoros do and you can get them in warm white as well. This would also save a lot of money on electricity bills and help us meet future green targets.
------
Question 11: What barriers prevent people with disability from accessing and receiving quality physical, mental and social supports?
Misunderstanding. Lack of awareness of autistic communication.
Due to different physical neurological structure our natural and instinctive body language is different to that of most people. In order to survive in the outside world we learn to mimic neurotypical body language and facial expressions with varying degrees of success.
Some of us are very good at mimicking this behaviour but it is not something that comes naturally to us and it does indeed require a lot of concentration on our part to do this. Maintaining it for any extended period of time is mentally exhausting. It is inevitable that we will make mistakes with this from time to time, even more so when we are anxious or distressed.
When we are trying to access health or support services it is always because we have a problem that is causing us great distress, and as such our facial expressions, our body language, and even our voice modulation, will not match what service providers expect to see from someone in our situation.
We describe our problems eloquently and accurately with perfect diction and phrased in a manner that there is little room for misinterpretation, but no one believes us. Even a doctor that I judged to be incredibly good told me to my face that I was just making up stories and that I was a hypochondriac, despite the fact that this was the first time I had tried to access medical services in over 10 years.
Practitioners also have to stop handing out SSRIs like lollies at Christmas. Depression Is Not Anxiety. Those drugs cause serious psychological problems for autistic people that are very difficult for us to recover from, yet all of us by nature are inclined to just do what the doctor tells us to. What is a fairly harmless drug for most of you triggers life changing events for us. It must stop. If someone is suspected of being autistic then they should be referred to for assessment by someone else who is also autistic before prescribing them any drugs.
There is almost no miscommunication between autistic people. It really does take one to understand one. This is of special importance with mental health issues, in this area more so than any other miscommunication almost guarantees misdiagnosis and therefore wrong treatment that is often harmful.
------
Cont....
My submission is below, I haven't sent it yet. I don't think I'll end up changing anything but I'd be curious to hear other people's thoughts on it. The reason I haven't answered all questions is because they specifically ask us to only respond to questions that we feel we have relevant answers for. It's rather a long submission so it has to be spread over a couple of posts - because of this forum's word count limit.
------
Dear DHS,
I wish to submit my input in to the State Disability Inclusion Plan Discussion Paper.
------
I am autistic. A high function ASD2.
I live in Mitchell Park, SA. 5043
I am 58 years old.
I am a standard heterosexual male.
I am on a disability pension and I live in social housing after spending many years homeless and unemployed.
------
Question 1: Reflecting on your own experiences, what barriers have you experienced as a person with a disability?
This is a complex question for someone with autism, the barriers are many and for very different reasons.
Sensory issues restrict access to public entertainment and hospitality venues as well as necessary services such as shopping, public transport, and health services.
Due to information processing issues, neurotypical body language and facial expressions often do not come naturally to us and this causes huge problems with access to medical services. We are misunderstood, disbelieved and misdiagnosed so often that we lose faith in medical services. Once again due to information processing issues, we are blind to many social cues and this often causes friction in work places.
This is an area in which we are not able to change, it is something we are not capable of learning, it’s the equivalent of trying to teach a blind man to read street signs and then getting frustrated with him when he can’t do it. We do not have a psychological problem, we have a physically different neurological structure that is more capable than yours in some areas and less capable in others.
This is where most mental health services also not only fail autistic people, but actually exacerbate their problems and make life much more difficult for them. Many are convinced that we can learn to “be normal” if we just try a little harder, and as practitioners present themselves as certified professionals who are supposed to be experts in their field many autistic people are inclined to believe what they’re being told and don’t understand why they can’t make any “progress”.
Health providers and especially GPs need to be better educated about autism. Especially important is that GPs understand that they must stop prescribing SSRIs to people that they suspect might be autistic. Our problems derive from a physically different neurological structure and these drugs do not work in the same way with us as they do with most people. For many of us these drugs trigger life changing events that we never recover from and we spend the rest of our lives as dependants.
------
Question 2: On a scale of 1 to 5, how accessible is your community for you or people with disability?
3 – Partly accessible
Reason: Audio sensory overload. Noise. Modern fashion in building décor is for reflective surfaces on floors, walls and ceilings. These surfaces also reflect and in some cases amplify sound to the point that some buildings are inaccessible to me even with hearing protection.
A classic example of this is the Marion Cultural Centre on Diagonal Road at Oaklands Park. The noise inside this building is only from people in the cafeteria talking but it is reflected and amplified to the point that it is unbearably painful for me to remain inside that building for more than a few minutes.
The Westfield shopping centre and the medical centre there also have the same problem. The Westfield shopping centre has a couple of additional problems. Stores playing music louder and louder trying to drown each other out, that really needs to be regulated and better supervised.
Another restriction to accessibility to that shopping centre for autistic people is smell. This is a big one, far more important than a lot of you seem to realise. Stores should be banned from burning scented oils, the scent extends far outside of their own store and pollutes a large area of the shopping centre. The scent is so painfully strong that it triggers headaches and makes us feel ill, as well as being a known source of carcinogens.
------
Question 3: On a scale of 1 to 5, how inclusive is your community for you or people with disability?
3 – Partly inclusive
Poor awareness and understanding of autistic issues restricts our access to a lot of public social events. Attempts have been made at making things more inclusive for us but our needs are often misunderstood and misinterpreted. This is directly due to the fact that nearly all autism research is focused on autistic children and parents of autistic children and the autistic adult world is very different from that of a child.
A perfect example of this was at the recent National Autism Strategy seminars held in the Adelaide Convention Centre. Organisers understood that many of us have an issue with lighting but did not understand exactly what that issue is. As a result they turned the lights down so dim that it was dark and spooky and scary in there and we couldn’t see to read any of the literature and nor could we see to write any of our responses to questions.
What we have a problem with is flickering lights. This means Fluorescent lighting. Most of you can’t see any flickering if it’s faster than 50 hertz, this is why most computer screens have a refresh rate of 60 hertz, to you it looks like it’s just a constant light. Many of us with autism can see that flickering up to around 90 hertz, to us a standard fluorescent tube is flickering like a strobe light, it’s very annoying and trying to ignore it is tiring and wearisome. Warm whites are much more gentle on our eyes than cool whites as well.
The Adelaide Convention Centre has theatre lighting – incandescent globes with adjustable power. This type of lighting is not subject to the flickering that we are sensitive to, and it is also a warm and comfortable lighting. It should have been turned up much brighter than it was, it would have made the seminars a lot more inviting and welcoming.
Public buildings should replace their fluorescent lighting with LED lighting. LEDs do not have the same flicker that fluoros do and you can get them in warm white as well. This would also save a lot of money on electricity bills and help us meet future green targets.
------
Question 11: What barriers prevent people with disability from accessing and receiving quality physical, mental and social supports?
Misunderstanding. Lack of awareness of autistic communication.
Due to different physical neurological structure our natural and instinctive body language is different to that of most people. In order to survive in the outside world we learn to mimic neurotypical body language and facial expressions with varying degrees of success.
Some of us are very good at mimicking this behaviour but it is not something that comes naturally to us and it does indeed require a lot of concentration on our part to do this. Maintaining it for any extended period of time is mentally exhausting. It is inevitable that we will make mistakes with this from time to time, even more so when we are anxious or distressed.
When we are trying to access health or support services it is always because we have a problem that is causing us great distress, and as such our facial expressions, our body language, and even our voice modulation, will not match what service providers expect to see from someone in our situation.
We describe our problems eloquently and accurately with perfect diction and phrased in a manner that there is little room for misinterpretation, but no one believes us. Even a doctor that I judged to be incredibly good told me to my face that I was just making up stories and that I was a hypochondriac, despite the fact that this was the first time I had tried to access medical services in over 10 years.
Practitioners also have to stop handing out SSRIs like lollies at Christmas. Depression Is Not Anxiety. Those drugs cause serious psychological problems for autistic people that are very difficult for us to recover from, yet all of us by nature are inclined to just do what the doctor tells us to. What is a fairly harmless drug for most of you triggers life changing events for us. It must stop. If someone is suspected of being autistic then they should be referred to for assessment by someone else who is also autistic before prescribing them any drugs.
There is almost no miscommunication between autistic people. It really does take one to understand one. This is of special importance with mental health issues, in this area more so than any other miscommunication almost guarantees misdiagnosis and therefore wrong treatment that is often harmful.
------
Cont....
