Disability inclusion questions

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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.

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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.

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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.

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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.

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Question 12: What does inclusive health care look like/mean to you?

Non fluorescent lighting in waiting areas.
Sound dampening textures on floors, walls and ceilings in waiting areas.
Practitioners that pay attention to the actual words that I speak instead of trying to interpret my body language.

Example: I fell and broke two ribs on the side of my toilet bowl. I presented at the emergency department in the Prince Alfred hospital in Melbourne. When I’m under stress like that my sensory issues are a lot more apparent to me and I’m less able to tolerate adverse environments so I’m under more mental stress than most people would be in that situation.

At this point in time I’m not able to present the array of neurotypical body language that I understand is necessary, I’ve got too much else going on to be very successful with that too. So no, my face is not screwed up in pain, my expression will be either neutral blank or with a slight smile, default expressions that I don’t have to think about.

Through having to fake body language my whole life I have extremely fine micromuscle control and any autistic person learns from a very early age that to display any form of weakness is to instantly become a victim. This is ingrained in us and habitual from the day we start school. So even though I have two broken ribs I’m standing and walking perfectly straight without appearing to favour one side. This is so habitual for us that for me to try and act like someone with two broken ribs would come across as false too.

When I spoke to the doctor I was well aware of the fact that I was likely to be misunderstood so I modulated my voice to speak very clearly and distinctly and try and minimise any misunderstanding, not that I would expect there to be any confusion with the statement “I have just broken two ribs.”.

She instantly disbelieved me and immediately jumped to the conclusion that I was either after a sick note or pain killers, of which I wanted neither. Nothing could deter her from that view, even a cursory inspection of my ribs brought out the comment “That’s just a contusion.”. I had two ribs clean broken and the ends were visibly stepped over each other.
I argued with her and told her that I wanted an xray but she refused to be swayed from the path her mind had already gone down. The only concession she would make was to offer me a one day sick note. I stood and bowed politely and said in a perfectly clear upper class British accent “I’m terribly sorry but it appears that I have completely wasted your time.” and I walked out. Yes, I was very angry and being sarcastic.

As I walked along the hall back towards the main entrance the doctor came out of her office behind me yelling and screaming at me, telling me she’d signed a two day sick note and she also had a box of pain killers in her hand. Her yelling brought a security guard running, he cracked up laughing when I turned around and yelled back “I don’t want your drugs, lady. What I wanted was a doctor!”.

I went to work that day because it was better than sitting at home feeling sorry for myself. My boss didn’t believe I could be working the way I was with two broken ribs at first, until I grabbed his hand and pressed his fingers against my ribs. The shocked expression on his face and the newfound respect I got from him afterwards was worth it.

That night I went to the pub feeling sorry for myself and one of the other regular customers there was a registered nurse. He got me to put my arms above my head and keep breathing in and in until my chest was expanded enough and he reset my ribs for me.

That is the best health care experience I’ve ever had in my life, from a stranger in a public bar.

A couple of times I have also received great medical care and advice from vets, they do understand me. Regular practitioners most often do not.

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Question 13: How can the State Government and local councils improve their responses and communication to people with disability in the event of a disaster or public emergency?

Most autistic people struggle to interpret information from voice. This is not so obvious in a face to face situation because we also get many visual clues from speakers that aid us in this process. Voice over electronic media is almost impossible for us to interpret, especially so if there is any degradation in the quality of the sound or if there are other sounds intruding around us.

Sound quality of normal phone services as well as most radio and television networks is to low for us to make much sense of it. As a comparison, the sound quality of a voice call over Whatsapp is much better and I am able to have conversations on Whatsapp calls, where as I really struggle to hear over a standard phone line and I have to keep asking people to repeat themselves.

Public announcement systems such as the one used in the Adelaide Train Station are completely unintelligible to me, I don’t even attempt to listen to them because the sound is too garbled. I have the same trouble in airports. If I cant see text or some kind of icons to let me know what’s going on then I have no clue as to what is happening around me. This is scary sometimes.

Information services on government websites are also heavily focused on providing information in “easy to understand video” formats. These are completely useless to me. I won’t even attempt to watch them, to me a Play button means that this information is not available to me. I need the text version and I need it somewhere up front so that I can find it easily.

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Question 15: How can our workplaces improve so that people with disability can fully participate and feel secure in their jobs?

This requires better education of employers, but on the plus side this issue impacts all people even though it goes largely unnoticed and misunderstood. By taking note of this issue employers can improve staff loyalty by greatly improving the social environment in the workplace, this always results in greater productivity and less industrial unrest.

Autistic people are very sensitive to emotional stress, this is by far a bigger problem than any sensory issues. We are completely blind to many social cues and are simply not capable of navigating one particular issue. Officially the term is Social Hierarchal Structures but most of us know it as The Hen Pecking Order.

Some people require a strong sense of hierarchy in their social surroundings and most of you just naturally slot yourselves in to correct positions within that hierarchy without even seeming to know that you are doing so. Autistic people are completely blind to these hierarchal structures, we are unable to conform and incapable of learning how to do so. This leads to friction in the workplace.

Most people do not require such a strong sense of hierarchy, but people that do require this strong sense of hierarchy will bully us and try to force us to conform, which we are simply not capable of doing. We are seen to be challenging the status quo, even though we don’t even understand that type of status. We are also often ganged up on by other people in the workplace who would never normally require such strict hierarchy and yet do understand it and sympathise with it.

This causes us to change jobs and change jobs again, desperately trying to find a place to work where we will be unmolested, and most often never finding it. Usually by the time we get to our 40s we are completely burnt out and have given up, we spend the rest of our lives on the dole. That’s not good for us personally, it’s costing our society a lot of money, and most employers are poorer for it as well.

Example: For more than 20 years I worked in a physical trade, I was an Offset Printer. It was a very physically and mentally demanding trade requiring aptitude with complex mechanical devices as well as a natural aptitude for maths, physics and chemistry. It was my perfect job and I loved it.

Although I had no formal qualifications it was something I was extremely skilled and talented at and a field that I had far more knowledge of than most of my contemporaries. That along with my eidetic memory, my hypersensitive eyesight and hearing and senses of touch and smell all gave me advantages far beyond what most other people would ever be capable of. My love of routine meant I was always at work on time each day regardless of circumstances and my innate sense of honour meant that I always felt obliged to give value for my wages.

I was a prize catch. I was worth any two or possibly three other staff. Reliable, consistent high quality of work along with consistent high speed and efficiency of work as well as being incredibly efficient with task and time management. I did know what I was worth and I was paid accordingly, I earnt near double that of many of my contemporaries and I was highly valued and respected. Clients loved me.

I didn’t know anything about autism at this time, but all the best printers were a bit highly strung, they all had a few funny quirks and were prone to quitting their jobs and moving on for the silliest of reasons. I fitted in perfectly. What I sort of noticed, but truly did not understand the value of, was that as such a prize employee I lived in a highly protected environment. If anyone was seen to be upsetting me, regardless of issues or right and wrong, if someone was seen to be upsetting me then they were in danger of finding themselves standing outside the front door holding a weeks pay in lieu of notice and wondering what the hell just happened.

For more than 20 years I was an extremely highly productive member of society, and earning money accordingly, all of which I turned back in to my local communities. I was highly social and felt very socially responsible as well, I always gave back every bit that I felt my community had given me, and always a bit extra just to make sure I felt no sense of debt. That sense of honour is hardwired in me, I couldn’t change it even if I wanted to.

Then in the late 90s came the home computer. Printing services were required less and less, within a 5 year period more than 65% of the market for printing vanished. Companies were going out of business every where and there was a lot more pressure on the few that tried to survive, it became a very high pressure job. In the end I was forced to find work in other industries.

For the first time in my life I found out what it is that most autistic people have to go through. For more than 20 years I had been very protected without having any understanding of what that protection meant or what it was worth. All of a sudden I had to try and cope with people that would try to bully me and push me around and if I tried to retaliate I was seen as the one in the wrong.

I became more and more miserable and depressed as I was forced to go from job to job, always feeling like it was me that was somehow inadequate. Deep depression inevitably followed. I had no understanding of why this was happening and it took me many years of complete isolation from humanity in order to be able to figure it out. Why my life had been so good before and why it had suddenly turned in to torment.

I haven’t worked my trade since 2002 and I haven’t worked at all since 2008. I do do a reasonable amount of volunteer work but this is because it can be done under my own terms and conditions. If you want me to work for free then you’d better be able to cope with my ways and foibles, not the other way around.

I am capable of that many things that I truly am worth putting up with, a broad spectrum polymath with eidetic memory and an IQ of 172 that also enjoys physical work and is incredibly good with logistics and forward planning, very organised, also highly socially skilled, a good salesman and advocate. All you have to do to have me work for you is to understand that I do not fit in the regular pecking order. I will always be outside of that order and anyone that tries to make me conform needs to be reprimanded, it is something that I am not capable of no matter how hard I try.

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Question 16: What other pathways to employment could support people with disability when exploring new opportunities in the workforce?

For autistic people great gains could be made from a simple mentoring programs, helping people to better understand both how to get a job and how to cope with that job once they’ve got it. The public education system does very little for helping people understand how life works in the real world. There is a simple fact of life though that must be taken in to account, regardless of any perceived disability.

I am unemployed = I have no money.

These services need to be provided free of charge. For autistic people this mentoring can only come from other autistic people that have the same experiences. This is not intended to disparage any other professional’s intelligence, education or dedication. It is a simple and basic fact that if you don’t have the same physical hardware then you are not capable of the same depth of understanding.

I like to use the analogy of a woman trying to explain to a man what it’s like to live as a woman. She can explain and explain until she’s blue in the face but there’s so many concepts that he’s not capable of truly understanding unless he has to live it. No matter how hard he tries.

That is what it’s like for autistic people to try and explain our issues to most people, where as most other autistic people understand intuitively with a sad smile and a nod and no words need to be spoken.

We need to set up a volunteer mentoring program for autistic adults. There will be no shortage of high functioning autistic volunteers, there’s a lot more of us than most of you would ever suspect and any of us will bend over backwards if we think it would help save some young person from having to suffer some of the same trauma we went through.

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I hope you find my above submission acceptable. It’s a series of issues that are very important to me and that I feel very passionate about. If there are any queries about my submission or if I need to somehow edit or change my submission in order for it to be admissible please do not hesitate to contact me, details below.

 

[Ken]

Holly Krap that's good stuff!!

I think it's Perfect or maybe a little better. I really hope it actually gets considered!

 

[ra49]

Outdated, I am speechless. That was amazing, and spot on.
Thank you so much for your clarity.
I hope they will pay attention.

 

[Outdated]

Thank you both for the support, it's nice to know I'm not barking up the wrong tree. I've been a socio-political activist for a while now and most of my state politicians know me. Our Minister of Autism wrote to me and specifically asked me to respond to that one.

 

[Ken]

Thank you both for the support, it's nice to know I'm not barking up the wrong tree. I've been a socio-political activist for a while now and most of my state politicians know me. Our Minister of Autism wrote to me and specifically asked me to respond to that one.

I'm very impressed that a Minister of Autism actually exists!

 

[vergil96]

At this point in time I’m not able to present the array of neurotypical body language that I understand is necessary, I’ve got too much else going on to be very successful with that too. So no, my face is not screwed up in pain, my expression will be either neutral blank or with a slight smile, default expressions that I don’t have to think about.

I have exactly the same problem. The second something happens to me, someone waves their hand in front of my nose and screams "Are you listening to me?" at best or they're aggressive at worst, because I'm apparently offending them by not maintaining eye contact and frowning gets read as being angry. It's a real problem.

Stores playing music louder and louder trying to drown each other out, that really needs to be regulated and better supervised.

Agreed.

there’s a lot more of us than most of you would ever suspect and any of us will bend over backwards if we think it would help save some young person from having to suffer some of the same trauma we went through.

True.

 

[Atrapa Almas]

I think that its very well written and explained.

 

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I'm very impressed that a Minister of Autism actually exists!

I am too. The office was only created 18 months ago and has so far made some huge changes to our public education system. Now they're starting to take more notice of autistic adults.

I was sent a personally written receipt for my "excellent and detailed" submission. It must have made an impression because just an hour later I received receipts for two other federal government submissions that I lodged a week earlier, the other two submissions were on a national autism strategy and on homelessness.

And on Friday I have an interview with a hotelier's association asking how they can make entertainment venues more inviting for autistic people. I'll be a happy boy if we end up with an autistic friendly pub in the city. That will certainly help solve a lot of people's dating issues.