Submission
No 138
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Name withheld
Date Received: 29 April 2016
Name
withheld
Submission S138 Received 29/04/2016
Family and Community Development Committee
Autism Spectrum Disorder Services inquiry
Part 1 – my story
I was born in the mid 70’s, apparently healthy, but I did not sleep well from the beginning and was very hard to settle. I was very delayed in all areas, I did not crawl, and only began to bum shuffle at the age of 16 months. I began walking at the age of 22 months. I had no speech. I was diagnosed at age 3. At age 4 I began speech therapy, funded at the time by the Department of Education. Throughout my life I have lived in multiple areas of Victoria, primarily in Melbourne, more recently in Barwon region.
In Prep I was in a special education class, of only 17. I loved my teacher and enjoyed school. In Grade 1 I was in a normal first grade of 36 students, which was the norm at the time. I continued with 2 hours a week of speech therapy. I hated school, had no idea of what was going on, could not follow the teacher or understand the children. I had significantly delayed motor skills, had no useable speech, and was continually mocked by the other children. I was not yet independently toileting, and in fact did not achieve that until I was almost 9. I was severely bullied. I was also constantly disciplined by the teachers, at that time by being smacked. I would be smacked because I was not paying attention, but I didn’t know what I was supposed to be doing. I did not know for example, that when they said, everyone look at the board that it included me. I would constantly get told “don’t do that again” but I never understood what they were referring to. Over the years the level of discipline decreased, as my speech improved and my ability to understand basic instructions improved.
In Grade 5 I moved to another government school, which was better, in that it did not really tolerate bullying. I was withdrawn into special group literacy intervention programs, during both Grade 5 and 6, but it made very little difference. The 2 hours a week of speech therapy continued. This school also introduced a friend for the day idea, in which I would be buddied up with a different child each day, each child in the class being responsible for me, one day every 5‐6 weeks. No one thought of what it meant to me to supposedly have a different friend each day, no other child was like that, or what it felt like when my supposed friend for the day was away and a class discussion would be had about who was going to have me that day, because no one wanted me. How on earth it was supposed to create inclusion is beyond me. I began at a government secondary school in Year 7 and was tortured beyond belief. I continued to have speech therapy. There was an aide in the room working with a girl with intellectual disability and she sometimes helped me, but was not funded for me. I spent 2 years at this school, being beaten often with quite severe outcomes, had books stolen and trashed, etc. The fact that I lived through those 2 years is beyond me. During Grade 6, the speech therapist began to work on some pragmatic skills, as well as continuing to develop my speech skills. During year 7 and 8, the work on pragmatics was at least 50% of what was done. At least 1 hour a fortnight was combined with the girl with an intellectual disability, trying to get me to play and interact with her more. In reality her social skills had surpassed mine. She also loved Barbies, but they were not real to me, and I could not relate to them.
In Year 9 I began at an elite private girl’s school and my luck turned around. I was only accepted as my sister was there on a scholarship, being before the Disability Discrimination Act, they had entrance tests, etc., but I had not sat it. The speech therapy I had been receiving stopped, solely
because I left the government education system, but in all I had received over 1,000 hours, something I will be eternally grateful for.
Within 2 days of me being at this elite girls school my parents were called in, I apparently could not read, but they also felt I had a great deal of potential. They had a teacher they knew of who now worked doing tutoring type stuff, who had done postgraduate training in working with children with learning difficulties and they recommended my parents took me to this person, which they did. I saw this person for two, 1.5 hour sessions per week. At the beginning of the year I was assessed as having the reading skills of a 5 year, 7 month old, so effectively a prep child. At the end at a 17 year, 9 month old, effectively the end of year 12, even though I was only finishing year 9. My written skills while also showing a remarkable improvement, did not improve as much as my reading skills, mainly in line with the difficulties associated with my autism. This private school also worked for another reason, everyone followed the rules, and bullying was not tolerated. I did not have friends, and in hindsight things were said mocking me about things, but at the time it all went right over the top of my head. There was no overt bullying, people would sit next to me, would allow me to sit where I wanted to, etc. If told to work with me, they did not question it.
While I might have learnt to read that did not make school easy for me. The executive function deficits in particular caused me immense difficulties, as did my lack of imagination (at the time a core diagnostic criteria for autism). While I could read the words in terms of novels for English I could not understand what they were about. To understand them I would have needed to be able to put myself in the characters shoes, something I could not do. Similarly I was completely unable to do any creative writing pieces. While I got the concept of putting things into my own words to do so was incredibly difficult, as it required me to be able to imagine other words I could use. Having to change from subject to subject was difficult, while I got used to room changes, having to get my head to change to another subject was very hard. I still had a great deal of trouble understanding things and if the class got distracted by something, I would not get back to the class when everyone else did. I still had huge motor coordination problems and so struggled in PE to the point that even teachers mocked me. I had compulsory drama classes, but the only thing in my report stated that I did not understand the concept of taking on a character. While I could answer short answer questions and the like, planning out an assignment was next to impossible and essays really were impossible, as there was no guidance on how to structure them or work out what to write. Even just being in class was difficult. Was I supposed to look at the teacher, look at the board, look at the book, or write notes? In effect I was expected to do them all at the same time and to know what to do when. None of it ever made sense to me.
I never had the capacity to play with other children. The first doll I received was for my 6th birthday. I simply rocked it in my arms, as I had seen my aunty doing with with my younger cousins. Neighbours children would come over to play with my siblings, but I never had the skills to be able to join in with their play, I was never actively left out, just when I could not join in, they just kept going on without me. When I was 8 I was placed in Brownies (through the Girl Guide movement), and while I was tolerated by the other children, I never made friends the way the other children did and I certainly never picked up any social skills. At the age of 8 I was also placed in Little Athletics, but all it did was to see me fall over running in a straight line, trip over and be scared of the hurdles, etc. They tried to put me in ballet classes but that did not work either. When I was 10, I was placed in Calisthenics, as I like to twirl things in my hands, but I was kicked out in only 2 weeks. At the age of 10 I was placed in
swimming lessons, initially individually and then in a group for older beginners, I ended up thriving at swimming and loved the water. At the age of 12 I was placed in Netball, I was taken off the court at half time and they continued playing with one less player, I was not welcomed back again. When I was 11, I moved from Brownies to Guides and things became much more difficult, as the girls had more say, more leadership and I was not welcomed. When I was 13, new adult leaders took over the group and they began bullying me in front of the girls, which only made things worse. Much of what was happening went right over the top of my head. One of the other girls reported it to their parent, and it was reported to regional managers and the like. They did step in and the leaders were taken out and new ones found, but the other girl’s had been taught so much by them and just kept bullying me, that after a few months I was moved to another group in a neighbouring suburb. At the time I had no concept of why I was being moved. I knew things were not right, but equally didn’t understand why I was in trouble, which was how it felt to me. Within the new group I was tolerated again, but certainly no friendships were formed. There was a lot of work required from leaders to keep me in the groups and to get the other girls to accept me. I stayed in the guide movement until I was 21. While others developed close friendships, I never developed any. In reality I was only ever tolerated by people.
At the age of 17 I left the family home due to severe abuse, and required intervention orders to keep me safe, in my early 20’s I changed my name, to ensure my continued anominity and safety. The systems set up to support such people, were not equipped to deal with someone as strange as me. I was in youth refuges, but things got completely out of hand if I was required to share bedrooms with other young people, which was often the case. I spent years in and out of youth housing programs, but no one could work out what to do with me. I would be bashed by other young people, and I would be the one kicked out, as my strangeness was why they had acted out and it was easier to find someone else that could share with them, than someone who could be with me. My immature social skills were about the only way to describe what was occurring. I could not have conversations with people and would simply talk at them about one topic, without any knowledge of whether they were interested or not. I had no ability to pick up social cues. It took a lot of work from very experienced and mature workers to enable me to cope for more than a couple of hours and to support the other young people to cope with me. In reality these were already young people that had huge personal issues themselves, expecting them to then cope with me alone, was hardly going to work. I was continually placed in counselling, but since I had not responded in the expected ways no one really knew what to do with me – I do not process things or even experience them the same as other people. Equally I was continually placed in one social group after another, so I could practice my social skills, as the belief was and in reality continues to be that if I am simply around other people for long enough I will naturally pick up on the social cues and hence improve mine. It never worked. People continued to get angry at me for it, and continued to ask me why I was not making any friends. I did 3 times try to live in general share houses in the community with uni students and the like, but they ended up worse than the youth housing programs. While it was easy to say messed up young people couldn’t cope with me, reality is no one could cope with me.
I was in and out of homeless services and youth services until I was 25. I just kept being moved onto another service. I kept being told I was too complex and they did not have the skills to support me. I moved over 80 times in the first 10 years I was out of home. I was finally granted the Disability Support Pension when I was 26, and then had the financial means to be able to afford to live alone. I moved to a bungalow in a backyard, which had so much mould that mushrooms were growing on
the wall, holes were in the roof and I had to hide in one part of it, when it rained as it was the only part that would not get soaked through. I had no cooking facilities, with the exception of an old microwave that didn’t work properly and limited running water. I lived there for 5 years. It was the first place I felt safe and at peace – it was the first place I ever lived alone. I knew it wasn’t a good place to live, but equally was scared that if I told anyone and sought help to find something else I would be forced back into homeless services, which were full of drugs, violence, etc. I had no idea of how to go to a real estate agent and apply for a property to rent, so did not know how to rent a one bedroom flat or the like. In 2014 I was finally allocated a public housing property, modified to meet my needs.
Once I excited youth services at the age of 25, I was handed over to mental health services, but the “your too complex, we do not have the skills to support you, find somewhere else” continued. I was continually handed from one service to another, community based disability mental health support services, which are supposed to be focussed on rehabilitation. I was kicked out of them completely when I was in my mid 30’s, told I was treatment resistant and not capable of being rehabilitated. I was continually placed in groups, so I could practise my social skills and make friends and again they would become angry with me and accuse me of not trying when things did not improve for me.
In my early 30’s I began receiving HACC services, but they too decided I was too complex and continually cut my services saying they did know how to support me, or where to get extra support from. One would think you would at least keep the current supports going, but not for me. Eventually I got referred to the Linkages program, for people who have complex needs that cannot be met by other service systems. I thought perhaps it would work. I got a letter telling me I was “too complex for complex care services”!! Again these services kept referring me to groups, so I could make a friend and practise my social skills. I was referred to 3 support groups for adults with Asperger’s; I was not tolerated in any of them, because my social skills were too poor!!
In January 2009 I attempted to get support from the Department of Human Services as Autism had finally been consider a disability by the government in December 2008. It was November 2010 and multiple appeal processes later before they finally approved me, they simply kept saying there was not enough proof that I could not be supported by other services, when I asked what services they could not refer me to any. I could not find anyone in the department who even knew what the word autism meant, or how to assess the application or how to find supports for me. As a part of this I was required to be reassessed and DHS did pay for a Vineland to be completed. I was assessed as having the communication skills of a 13 year old, daily living skills of an 8 year old and social skills of a below 1 month old infant. Yet they kept telling me to go and get support from elsewhere. Having said that I was approved however did not mean I could get any supports. It simply said they had finally accepted I was disabled under the Disability Services Act. Then I was told I needed to find a carer, so the carer could get respite and other services for me. It was July 2011, before I was finally placed on the Disability Support Register, awaiting allocation of an Individual Support Package, which naturally never came. An FOI request in 21013 showed that the panel that approved the DSR application did make a formal recommendation that I be referred to advanced case management due the complexity of my situation, but that was not something I was ever notified of and it never eventuated. What if anything they could have done, I do not know, the system was not designed for people like me. There were flexible support packages but one had to have a carer to have those which I did not have. There was the outreach program that provided some support within the home,
block funded to an agency in each region, but you must have a physical, sensory, intellectual or degenerative neurological condition, so autism did not qualify.
In early 2013 I was notified that I would be one of the first to enter the NDIS trial as I was living in the Barwon region and on the Disability Support Register. I finally had hope that finally things might begin to improve for me. How wrong I was to be. My NDIS experience has been a complete nightmare causing me immense emotional torment. While the NDIA did approve me as a participant in the first week of July 2013, they would not agree to fund any supports including the ones I was currently receiving, as they did not believe that there was enough evidence to prove that I had made enough attempts to make a friend and get the friend to provide the supports I needed! I initially took the NDIA to the Australian Human Rights Commission in August 2013, as they were refusing to communicate via email as per my repeated requests, including 2 formal complaints to them about it, and the planner who I had request be replaced, was continually ringing me to the point that I would hide in a wardrobe shaking for up to 4 hours each time the phone rang. Nothing was resolved. I have lodged over 50 internal complaints with the NDIA, taken them to the Australian Human Rights Commission twice, taken them to the ombudsman and lodged 3 formal complaints to the minister. The NDIA has stated it is unreasonable for them to be expected to know that autism involves social and communication deficits. When that is the core diagnostic criteria, one would think it would be the same as saying it is unreasonable for them to be expected to know that blindness means the person cannot see. While the NDIA would agree to allocate new planners and begin the planning process again, it never occurred. It was not until November 2014, that I was finally allowed to write my own goals and even meet with a planner to talk about my needs. I had plans before that, but they were written by people who had never met or communicated with me or anyone who knew me. All communication with the NDIA is now through a support coordinator (case manager) as I am simply too fearful to have any communication with them. The phone calls only stopped when the support coordinator stepped in and took over completely, some 12 months after I initially began complaining about them. The NDIA has never apologised for anything that has occurred to me, including the hundreds of phone calls I lodged too many complaints about. It was 9 months after I was approved as a participant that I finally got any basic supports funded by them, because for that 9 months I kept being told I needed to make friends and get friends to meet my support needs or even pay for them in some cases of equipment! The NDIA does not understand what the word autism means and does not appear to have any interest in learning, even though it is the largest group they have. They will only list autism as the disability if there is nothing else they can list, even though the autism would in 99.9% of cases be the primary disability.
The NDIS did eventually bring funding for services to me and I hoped that entering the disability service system would provide me with better supports. I was again to be very wrong, service after service simply said I was too difficult and would not place workers with me. Eventually I got to specialist autism service providers and I thought finally it would work, again my supports were terminated on the basis that I am too complex and no one knows how to support me. When the whole world says you are too complex, where does that leave someone? I have now had over 30 agencies refuse to work with me all claiming I am too complex. That involves homelessness, youth services, mental health services, disability services and specialist autism disability services.
Since I left school I have attempted 8 tertiary education courses, only 2 were successfully completed. One I failed every subject at least once, and then rarely got more than a very basic pass for anything
else. The other most recent one I had intensive supports in place. I did only study part time (never more than 30% of the full time workload), I would never have coped with anything else. I was given a note taker/participation assistant to support me in all classes and sometime outside of classes for them to assist with assignments and the like. I had specialised testing procedures. All tests/exams were sat individually in the Disability Liaison Officers, office. I had a scribe to write for me. I was given an extra 15 minutes per hour and all papers were broken up into hour long papers, so I could have a rest in between. So instead of having one 3 hour exam, I would have 3, one hour ones. At one stage I was allowed access to a general English language dictionary, so words which might not make sense to me I could understand. I was not allowed a course/subject specific dictionary. I was expected to learn key terms the same as every other student, but I can easily misinterpret a standard word used in everyday language, and a standard dictionary was seen as a reasonable accommodation. I would at times be given extensions on assignments, and depending on the individual subject and what the purpose of it was, I might get an exemption from group work or someone to assist me with it, when it was required. If I was doing a subject on tax legislation do I need to be able to work in a group for that, no, but if I am doing a subject on communication then it would be reasonably expected that I do.
I have utilised the services of 9 Disability Employment Services, all initially said this would be easy and then kicked me out saying I was too complex and was not employable. I am now banned by Centrelink for accessing Disability Employment services on the basis of the last report written by one which said “the best we could hope for is an employer willing to tolerate having her around .” None of them had even a basic understanding of autism, none of them could comprehend my strengths verses my difficulties, they initially focussed on the strengths, and then could not work out where the difficulties came in and the problems they were going to cause if they were not accommodated. I have done close to 30 different jobs, primarily voluntary a few short paid jobs, but none lasted. People expected me to know more than I did and to have better social skills. They also could not comprehend the difficulties I have in what is often referred to as executive functioning deficits. Truth is I would need support to work and while I can do that with what is funded by the Disability Employment Services they actually have to be capable of providing it. I have each one of these services to give examples of what support they could offer me and they just kept saying we can support you, I said doing what, I was never answered. I asked for an example of what they had done with other people with autism to be told, we support many people with autism, when again I asked how, they never answered. All the jobs I have had were found by me without their support. A few have placed me in voluntary work, but it never lasted, largely because it was never supported.
Health care has also been incredibly difficult for me over the years. I have little understanding of my internal body feelings and struggle to communicate that to doctors. Equally I am often expected to take in huge amounts of information verbally which I struggle to do. I struggle due to sensory issues with many medical procedures and while I can tolerate them, just having them done slower would make a world of difference for me and explaining what is about to occur. People seeing my autism and refusing to consider any underlying medical issues is also very common. I have seen 12 psychologists over the last 20 years, all terminating on the basis that I was too complex and they did not know how to assist me.
I have attempted to use 8 Disability Advocacy Services over the last 10 years, all rejected me, telling me I was too complex and they could not support me. The last one told me I needed to understand
that no one in the world knew how to assist me and so I would need to live in solitary confinement until someone found ways of working with people like me. I cannot comprehend how they are even called advocates most of the time. Over the years I have lodged complaints with multiple agencies that should be there to protect my rights, The Australian Human Rights Commission, the Victorian Equal Opportunity Commission, Disability Services Commissioner, among others. All have told me I needed to communicate with them verbally and talk to them on the phone, including in the last 3 months. These agencies tell the world they need to be more inclusive of those with disabilities, the NDIA says the same thing, yet they themselves are not even able to communicate with people in writing, let alone support those with more complex communication issues. The Office of the Public Advocate does not even have an email address and will only talk to people over the telephone. If all of these agencies cannot communicate with me, in writing, let alone taking in the complexities of things I might not understand due to my autism, then how can I expect anyone else to?
Who am I today? I am a polite, highly intelligent and articulate person. On the surface all seems fine, and I wish it was. My basic social skills are good. I know how to stand in a line and wait patiently. I know how to sit quietly and wait. I know how to say please and thank you, etc. What I do not have any of is inter personal skills, but you cannot teach that in quite the same way, if you can teach it at all. I have no concept of non‐verbal communication. I cannot tell the difference between a smile or a frown because I do not notice them. I can look someone in the face, but it means nothing to me. No attempts to teach me to comprehend facial expressions, over hundreds of hours, have ever worked. Hence I pick up absolutely no non‐verbal cues that people give about anything. While I am articulate I tend to talk at people about only one or two topics, and have no ability to have the average conversation. I do not understand jokes or sarcasm, do not pick up tone of voice and do not pick up when people put emphasis on different words. I misinterpret much of what is said to me. I cannot understand complex information or multi‐step instructions. I can cope with one or two people, but put me in a group and I’m struggling to make sense of what one person said and process that, and then before I know it another has started. I become incredibly overwhelmed and shut down completely. Put other things going on around me and I struggle even more. Having a conversation at home is not the same as having a conversation in a public place. I do not understand why people do not like the same things as me, why they do not understand things the way I do. People expect me to know better. Given how intelligent and articulate I am, people expect me to be able to have conversations with them; instead I talk at them about things that in most cases are boring to them. They expect me to get jokes and sarcasm, and above all else they expect me to pick up non‐verbal cues. I am not forgiven for my mistakes, like a person with an obvious communication or cognitive impairment would be. In the last 2 years more than 50 workers have stopped working with me, basically because I was too boring to be around and I should know better. They could not comprehend their job, because according to them I should not need support, I just needed to try harder.
I have immense difficulties with emotional control and anger. While I learnt through being beaten as a child not to let things out in public, I still have severe meltdowns at home, almost every day, often multiple times a day. I struggle to comprehend what my body is telling me and have no coping skills. I suffer from high levels of anxiety as I do not understand what is going on around me. I have large theory of mind difficulties, and am unable to put myself in another person’s shoes, so to speak. I
cannot read the emotions of others as I have no non‐verbal communication skills. People continually tell me I need to try harder to think about other people, but I do not view the world as they do, and no one ever tries to put themselves in my shoes and consider how I see and experience things.
My special interest is social policy, especially disability and autism and it consumes my whole life and is about the only thing I can talk about. I do watch some documentary type TV programs, but nothing else. I have effectively no imagination (which used to be a core diagnostic criterion for autism), so the usual TV that others might watch is not something I can comprehend. Even going to the movies can be incredibly difficult, reading a novel is impossible. I do not understand other people or the world I live in.
I have ongoing motor coordination issues, which impact every aspect of my life. Even a simple task of having a shower and getting dressed, will take me on average 3 times longer than anyone else, just because of how slow and uncoordinated I am. I have no concept of how to pick out clothes to wear, or what colours might go with what. I have immense sensory issues and am oversensitive to everything. Hence I spend a lot of time avoiding sensory stimulation. Listening to a train go past, if I am standing near a railway will cause me immense pain, and the noise will continue to ring in my ears for up to 10 minutes afterwards. I hate any alarm type sounds and am acutely distressed by them.
I cannot safely drive a car. Sure I can know the road rules better than anyone. I can know how to operate the car as well. I can drive it without problems; I just cannot do so on the road with other drivers, as there is so much going on around me. I cannot process all the multiple information from multiple sources, nor can I understand all the hand signals that people give – for me I simply see someone moving their arm in the air. How am I supposed to imagine what it might mean? I did obtain my driver’s license, the test really did not test much at all, but within the 3 years I was driving I had over 14 accidents, all of which could have been avoided. People say I need to just try harder, I think I made a responsible decision by saying I am not safe on the roads. Similarly I have great difficulty crossing the road. While I get the concept of what is required, having to process all of what is going on around me, while at the same time trying to work out the intentions of the cars is incredibly difficult and sometimes impossible for me.
I have lots of executive functioning deficits. I cannot problem solve, in order to do so I need to be able to imagine other ways of doing things, something I cannot do. I have memory problems and so constantly forget things. I have very poor organisational and planning skills, but again that requires an imagination to work out how to do things. I could spend up to a 1000 hours on an assignment, yet not much would come of it. I can read an article, but to then have to summarise it and put it into my words requires me to imagine other words to use and other ways it could be said. Reading something once I learnt to read was easy; doing something with it is incredibly difficult. Equally how do I plan out what to say in an assignment? How do I know what to focus on, because I see so much detail, I cannot work out what to focus on. I cannot multi task. In a workplace if given a task I can do it, but I need guidance to move onto another task, I’m not just going to find something else to do. If someone comes to talk to me it takes me quite a while to get back to what I was doing, as it completely disorients me.
There is nothing fun about having autism for me, as it is a significant disability that impacts every aspect of my life, from the most basic tasks. I do not understand 90% of what goes on in the world
and most of the time feel like an alien from out of space, in a world that does not want me in it. For me the world is a confusing mass of things that do not relate to anything. I have significant strengths and skills that I would love to contribute to the world, but in order to use them I require both accommodations and support, which the world is not willing to provide. It is all well and fine to say a blind person has these strengths, but if we do not provide them with a white cane or guide dog, screen reading software and the like, then none of them are going to be able to realised, that is what life is like for me. I do not have the accommodations and supports I require. Whether I like it or not I have autism and as a result of that I have significant social, communication and executive functioning deficits and sensory issues. If I can get support to find ways of living with those things, then I can take part in life, but at present no such thing is possible, everyone says to focus on strengths, but doing that completely ignores the disability I have. I just keep being told I need to try harder. The world sees me as the laziest person that has ever existed, yet in reality how many people would keep getting up with all the failures and rejections I have and continue to experience on a daily basis. I have over the last 6‐12 months began to realise that there honestly is nothing else I can do, I have been rejected by everyone and everything, and now I just survive a boring life mostly devoid of human contact, rarely walking outside my front door, because no one wants to be near me, and everyone has given up, with the excuse that I am too complex, but equally I just need to try harder. I hope that by telling my story that those younger than me do not have the experience the life that I have experienced. I know that it is too late for me.
Part 2 – answers to questions and general ideas
Autism is a completely misunderstood condition and the current process of telling the whole world they have it, is only making things worse for those who truly are disabled by it. No would try and say they know what it is like to have their eyes surgically removed when they get their first pair of reading glasses but that is effectively what is now happening with autism. Everyone has autistic traits, just like everyone experiences some degree of vision impairment. The difference lies in when we try and say that someone has a condition. Having a few traits is completely different to being profoundly disabled by it.
People can understand other disabilities, they cannot understand autism. A person cannot see, we can put on a blindfold and try to imagine what it would be like. A person cannot hear, we can put in ear plugs and imagine what it might be like. A person cannot walk; we can put ourselves in a wheelchair for the day. A person has an intellectual disability, they function at different levels, but we can watch a child of the level they are basically functioning at and say imagine what it would be like to put that child in our adult world.
How do you explain that you can see normally, but you cannot see facial expressions? The usual response is get your eyes checked, look where you should be looking. How do you explain that you do not pick up all the million and one social things that everyone else does, like when you get into a lift you all go to the back turn around and face the door? There are millions of things that you do every day without thinking because you just naturally picked them up, what happens when you do not. How do you explain that despite being taught to speak you cannot process the information that people say verbally, even though you obviously do not have an intellectual disability. How do you explain that while you can hear you cannot hear tones of things? How on earth do you try and
explain that you do not have an imagination and cannot imagine things, you cannot imagine what that car is going to do, and hence can barely cross the road. That because you cannot imagine you take things literally and so misinterpret so much. That because you cannot imagine you cannot read a novel, because it involves putting yourself in the other characters shoes, you cannot watch 99% of TV because you cannot understand it. Even people who have been kidnapped overseas are able to know if the kidnappers are happy or angry by facial expressions and tone of voice, even if they cannot understand what is being said. Imagine the world appearing to speak in another language and not being able to even know if they the other person is happy, sad, angry, etc. That is my life every single day. Imagine feeling acutely distressed every time you walked outside your front door due to overwhelming sensory issues. Everyone says you get used to it, problem is I don’t. When people live on really busy roads, next to schools, child care centres and the like they say that after a while you learn to ignore the noise around you. I never learn to do those things. Add to all of this all the executive functioning deficits that I have and people get even angrier at me.
At the same time imagine what would happen if no one bothered to explain why you were not able to do those things. Sure the word autism is said to you, but it does not explain what it means or why you are different to other people. Instead everyone keeps trying to tell you, you are just like other people we all have differences like some have black hair and some have blond hair. No one tries to pretend that being blind is normal. What happens if no one teaches you how to compensate for that disability, and instead just keeps telling you to try harder. No one would consider denying a blind person access to a white cane and training in how to use it, yet I have been denied any access to any sort of assistance to teach me how to live with my disability. Therapy has a huge role to play in the early years and teaching children how to do things and up until the early teenage years can still be of assistance. But once we get to the teenage years and especially once we get to adult hood we need to start to understand that this person is never going to get better and we need to begin to teach them how to function in a world not designed for them. A blind person cannot get a job if they do not know how to function in the world as a blind person. We need to teach them how to use screen reading software, we need to teach them how to use a white cane, etc. Yet we do no such things for people with autism. It does not matter what their strengths are if they do not know how to function in the world at large or how to function in a workplace.
“In typical children, the acquisition of friendship skills is based on an innate ability that develops throughout childhood in association with progressive changes in cognitive ability, and modified and matured through social experiences”.1
“Neurotypicals seem to find, make and keep friends easily, so they often have great difficulty understanding why this is so elusive for someone with an ASD. If a person with an ASD does not have any friends, the naïve response of an ignorant neurotypical can be, “Well, you should just try harder”. Unfortunately, it is not that simple.
A number of important skills are necessary for a person to make friends. These include the ability to read and interpret body language and understand social conventions and boundaries; the art of
1 Attwood, T (2007). The Complete Guide to Asperger’s Syndrome, Jessica Kingsley Publishers, London.
conversation and self‐disclosure; and the ability to gauge the correct balance in terms of intensity of engagement in friendship. None of these abilities are intuitive or easy for a person with ASD” 2
Despite the autism community supposedly knowing these things, they themselves keep telling people to just try harder, even when they are middle age and do not have any of the required skills. The general community just cannot comprehend it. No one would consider telling a person who is blind to try harder at seeing, or a paralysed person to try harder at walking, but that is all that is done for those with autism. For young children some of these skills can be taught to some degree in early intervention, but for adults, we need to accept that it is not going to happen.
Accessing Services and quality of services
ASD is a spectrum from those who are profoundly disabled, to those who might best be described as having a different style of thinking. This makes it incredibly difficult to look at what works and what doesn’t. What one group needs another does not.
Information on young children is usually pretty good and widely available. For primary school aged children, not too bad either. Entering adolescence it is becoming difficult, for adults next to impossible to find information. For adults information is at either end of the extreme end, those who are so profoundly disabled that they are unable to do anything at all and require assistance with all aspects of daily life, to those at the extreme other end of the spectrum who have university degrees, are employed, married, raising children, etc., and want advice on those things. Anyone in between is non‐existent. No one seems to be able to comprehend that there are others in between.
Added to the inability of anyone to consider that anyone in‐between exist is the reliance on those who are incredibly high functioning to give advice on everything and people being told if you just tried harder you could be like them to and parents being blamed for their children not reaching that point. Vision Impairment is a spectrum as well, at one end you have those who have just got their first set of reading glasses, to those on the other end who have had their eye’s surgically removed. No one would consider getting people who had just got their first set of reading glasses to give advice on what it is like to have had to your eye’s surgically removed and it should not be being done for autism either. Those who are incredibly high functioning have valid experiences, but they are no more important than anyone else’s and no one else should be being compared to them and blamed for not reaching their level of functioning. There is a big difference between someone who has difficulty with something or finds something difficult and those who are simply unable to do it at all. There are some who take longer to learn to read non‐verbal communication and others who no matter how much support we put in to assist them, never learn it. This is happening in schools all the time. There are constant criticisms of the so called experts schools are calling in to advise them on behavioural support, and the subsequent methods being used. They are getting in people who claim to have autism and it might be true, but having autism does not make someone an expert on positive behavioural support and most have no idea of what it even means.
The other confusing part is that the diagnostic criteria has changed so much that it is barely recognisable from only 25 years ago. It used to be a core that people with autism lacked
2 Attwood, T., Evans, C & Lesko, A (2014) Been There. Done That. Try This! An Aspie’s Guide to Life on Earth. Jessica Kingsley Publishers, London.
imagination, now it has been removed from the diagnostic criteria. Equally it used to be a requirement that children lacked play skills, and they had no concept of how to move a toy car across the floor and would instead simply spin the wheels in front of their eyes. Differences in play have been removed from the diagnostic criteria. Problem is people who have these difficulties still exist, but no one seems to be able to consider what life is like for them.
Health Services
The health system relies on verbal communication and by its very nature is not accessible to those who do not communicate well in that mode. It is also a very rushed system and for those who have difficulties processing information, time is not given to them. Add to that sensory issues and automatically before you even start seeing anyone problems develop.
The health system assumes that people who cannot speak cannot understand, while that is true in many cases, there are people who communicate via many other means, and attempts should always be made to see how the person communicates. Assumptions are also made, which I have personally experienced that because I can speak fluently with an advanced vocabulary that I do not have difficulties with receptive communication. People with autism take things very literally and it is common to ask very vague questions, whereas people on the spectrum need very precise questions. Asking me how I feel means nothing to me. Equally asking me to judge my pain, without visual cues is not something I can do. I have immense difficulties connecting my internal feelings into words and having to describe things can be incredibly difficult and challenging for me and many others on the spectrum. I have also had experiences of people getting angry with me, because I have not read non‐ verbal cues or tone of voice and so do not understand what is wanted. I will fiddle with things, rather than stim but that is always seen as me not paying attention, whereas for me it is a calming mechanism. I take time to process information and that time is not often given. When they ask a question they expect a response, whereas I need to think about and consider that response. Sensory issues really compound things. I struggle with florescent lights, and people touching me which always makes things much more difficult as they are going to happen. The usual response is to touch lightly and often a heavier touch is easier to cope with. I also have problems with memory which are not obvious. This means information is given verbally on the belief that I will remember it, when I will usually forget it. I also require very concrete information, saying a few days means nothing, I need a day given to me. If I am not better by x day to come back again, means something, to say monitor yourself for a few days means nothing. People often need assistance to work out how to fit treatment into their daily routine, which is assumed that they will be able to work that out.3
Assessments are incredibly poorly done and rarely if ever follow recommended guidelines, in particular paediatricians rarely if ever do any form of medical assessment, hearing checks are rarely done, etc. It is incredibly rare for both psychologists and speech therapists to be involved, nothing else if ever considered and observing the child is not always carried out and rarely if ever do they
3 http://autismandhealth.org/?a=pv&p=main&t=pv fac&s=fac fac&theme=ltlc&size=small
observe the child in another environment, which should always be done. Those done for children at the more extreme end are better quality, and more likely to be multidisciplinary. For children with Asperger’s type systems, often done by a psychologist, simply talking to them for an hour or so. For adults the situation is even worse. It is not just about no funding being available for adults, it is that people are referred by a GP on the basis of depression and a psychologist says, because you only have a handful of really close friends you must have Asperger’s, and that is the whole assessment process. Rarely if ever are any formal assessments involved. While a psychiatrist and speech therapist should be involved as well, it never happens.
People can be and are wrongly diagnosed with autism. No one benefits when they are given the wrong diagnosis, nor a rushed one. A good quality diagnosis provides a detailed understanding of the person’s strengths and weaknesses, areas where intervention might help, where to obtain that, and how to accommodate different things. Telling a person or parents in the case of children they have autism, but doing nothing else is of no use to anyone. If people do not have autism, then ruling that out and allowing them to find out what really is going on for them, is helpful, as then it allows them to find the right supports for their needs.
Autism has become the latest fad and is the only thing anyone ever considers. Children who are being abused will show the same signs of a child with autism. Children who have simply had non‐ involved parents will show the same signs. The very early signs in children under the age of 3 are seen in children who have developmental delays and will subsequently go on to have an intellectual disability. It is all well and fine to say children normally do this by this age, but not doing so can mean a million and one other things, but the only thing ever considered is autism. Children with attachment disorders show the same signs. Yet a trillion hours of autism therapy is going to be of no benefit to a child with some other condition, yet the right kind of support/therapy for the condition they do have is going to be of much benefit. In many cases even medical conditions are being diagnosed as autism, rather than treating the real condition. The following are all true stories.
A child had immense difficulties sleeping from birth and would literally stop breathing multiple times during the night, snored incredibly loudly. It was mentioned to maternal and child health nurses and doctors, all completely ignored it, the child was always tired and exhausted. As the child aged, it only got worse, by the time the child was 3 it was at the point that parents would spend each night taking it in turns to watch him sleep. Finally a referral was made to a paediatrician. They took along a video of the child sleeping or rather not really sleeping. It was scary for anyone to watch. The paediatrician took one look at the child, refused to look at the video and diagnosed the child who was being very active as having autism. No one questioned the diagnosis, therapy began, and nothing helped the child. Eventually 17 paediatricians later they agreed to look at the video clip and not just blame it on autism, and the child was discovered to have huge tonsils and adenoids, never seen them so big. A urgent referral was made for removal, which occurred in a matter of weeks. The surgeon, head of department and having done such things on children, had never seen them so big in over 40 years. Immediately after surgery the child began sleeping and behaviour improved dramatically, began to listen and interact more with the environment.
Another child, parents are very low educated, unemployed and from families with generational unemployment. The child when an infant and being weaned onto solids would have food come out of their nose. It was mentioned to both the GP and Maternal and Child Health Nurse, but it was
ignored. As they became a toddler, they began to fear food and not want to eat it. Speech did not develop normally. Was referred to a paediatrician aged 3.5, referred on without medical assessment for an autism assessment, on the basis of having food issues and delayed language skills. Diagnosis confirmed. Speech therapy began. Changed to a second speech therapist 6 months later, aged almost 5, who eventually looked into the child’s mouth, the child had a cleft palate. The child was booked in for immediate surgery. Sure it is possible that the child has autism as well, but no other real signs are present or ever were, and without treating underlying medical issues first no one will ever know. One can only guess that the outcomes would have been better for the child had the cleft palate been picked up much earlier and what excuse does the paediatrician of all people have.
A child was born profoundly deaf, diagnosed at birth. Mum developed severe post‐natal depression, so the child’s needs appeared to be completely forgotten about. The infant was being fed and looked after, nothing else was considered. No one followed up on what was being done in relation to the hearing impairment, all concerned with the mother. When the child, who had no form of communication or of even hearing anything began to have behavioural problems at age 2, he was referred to a paediatrician and a diagnosis of autism was made. The deafness was not noted or acknowledged. Child placed in autism therapy, no supports for the deafness were made. Finally considered the deafness aged 4, when gains were not being made. Child eventually given a cochlear implant.
All of these children could have autism as well, but common sense says that the underlying medical conditions and other issues should have been addressed much earlier and treated and stabilised before any such diagnosis is considered.
The waiting lists for diagnosis are too long, but equally poor quality diagnosis done quickly and hence poorly is of no benefit either. Diagnosis for autism cannot be rushed. So much needs to be considered. We need to establish minimum standards and a register for all diagnoses to be confirmed. Ideally this would be nationally, but a state based one to begin with is better than nothing.
Services in rural and regional Victoria
Services in rural and regional Victoria are not good, especially in more rural areas and trying to find real autism expertise can be difficult. People have significantly less choice, but equally that is so for everything.
Integration across governments and services
There is no integration of services. At best they refer on, but they never work together. There is beginning to be some integration between early childhood intervention and kinders and primary schools to assist with transition, but beyond that, nothing exists. At best they are referred on.
Disability Service Providers
The disability service sector is horrific in their interactions with those with ASD, even services that claim to be specialist autism service providers rarely tolerate those with autism, especially those who can speak. One often has to question how much even specialist autism service providers
understand of autism when they can only work with those who are non‐verbal and whom they are using restrictive interventions on. When services claim to be specialist autism services for those with the most complex needs, but then terminate services and leave the person without any ability to walk outside their front door because they claim they are too complex, because the staff find them too boring to be around, really have to question what it is they want.
They cannot provide quality services if they do not know what the word autism means, or if they expect everyone to have an intellectual disability. On one hand we need to remember that it has only been since December 2008, that people with autism could access disability services and that the government even considered autism a disability. Prior to that all that existed was support for those with an intellectual disability, that only met the intellectual disability needs not the autism needs. However while the law might have changed, trying to educate a whole industry, when funding is not there to even bring these people into services is not going to happen and to date largely has not happened. Any understanding the disability industry has of those with autism are based on those with profound behavioural issues and intellectual disability. Yet truth is some of those with an intellectual disability function better than many without, yet the sector cannot comprehend that, any more than it can comprehend anything else. They cannot imagine what it is like to have autism. Even the so called top specialist autism service providers cannot comprehend that there are people disabled by autism who do not have an intellectual disability. They too blame the person for who they are, and the state they are in and just tell them to try harder. It would be good if they could tell people how to try harder and exactly what it is that they want them to do!!
The level of unquestioned restricted interventions used on people with autism is not acceptable. Sure the log them all with the senior practitioner, but no one ever considers if something else could be done. Everyone expects the person to confirm to their expectations and never consider providing reasonable accommodations to meet the person’s needs.
The vast majority of people with autism have never had workers spend time with them, just to be with them or to show any interest in anything about them. 99.9% of support is based on training them to be independent. What the person learns is that no one wants to be near me except to make me do things I do not want to do. These are people, who are profoundly socially isolated due to the nature of their disability, and making friends is not that simple, yet no one ever shows any interest in anything about them as a person. It is all about coming in and teaching them to do this, teaching them to do that, and telling them they are not worthy as human beings. If the only contact you ever had with the world was to tell you how defective you are, how would you cope?
Truth is that in some cases it would be kinder to euthanise people than to treat them as we currently do, but no one is willing to honestly consider what life is truly like for these people, they just use the excuse they are doing the best they can, largely because they cannot be bothered doing anything else or even considering anything else.
Education and Housing
In terms of education the most important thing to get rid of is a belief that an aide can solve all the problems that children with autism have. The most important thing for a child with autism is someone who knows HOW to teach them, giving their unique needs.
Professor Rita Jordan stated this at a conference: “if we had a blind child we wouldn’t dream of saying look the world is made for sighted people, especially the educational system, it would be a lot easier if you could see, so we are just going to pretend you can, ok. Here’s your book, this nice classroom assistant is going to sit next to you and turn the pages at the right time, and off you go. Some of you are laughing and looking at me as though I am mad. Because this is not something you would do, you recognise it is stupid and cruel, yet often that is the message that goes out to children with autism. Look the world is not going to adjust to you, look the sooner you get on with it the better, here sit down, here’s an assistant to help you to act as if you are normal. Just as stupid, just as cruel, just as ineffective.” 4
For children who are vision impaired we have for a very long time had what is referred to as an Expanded Core Curriculum. Basically it refers to the things a person who is blind needs to learn in addition to the standard curriculum in order for them to be able to live in a world designed for sighted people. This has in recent years been extended in many parts of the world for students who are Deaf or hard of hearing. Children, who have autism, probably need this more than most other disability groups as they are not able to pick up information or even know how to ask for what they need to know, but at present they receive no such support. They also have no ability to access this outside of the educational system and probably never will. Equally under developed for people with autism are appropriate accommodations and modifications to curriculum and assessments, etc.
The educational system is incredibly verbal, yet individuals with autism have trouble taking in verbal information. Even those who appear to have good verbal skills, do not usually have the same level of receptive language, but even with basically good receptive language skills, still have difficulty processing information. Teachers also naturally use metaphors, as all students learn best when metaphors are used, problem is that confuses and confounds things for children with autism. Most people on the spectrum have immense difficulty shifting the focus of their attention and in many cases even knowing what they should be attending to.
To date our major response has been at best to put an aide next to the child, and get them to do something with them. With the best intentions in the world teachers are out of their depth and while attempting very hard initially soon give up, because it all becomes too hard. Who can blame them? No one expects a teacher to know how to teach a blind child to read braille and nor should we be expecting them to know how to teach those with autism without assistance.
I ask you to imagine you have a year 12 legal studies class, as a part of that class you are having a class discussion on suspended sentences, a number of children with disabilities will need to be included in the class. The first is paralysed. Easy I am told, simply put a ramp into the room, make sure the table is of an appropriate height for the wheelchair. The second is blind. Easy, make sure any written material is in braille and anything written down is verbally explained. The next is Deaf; make sure they have an Auslan Interpreter. All straightforward, all workable. The next has autism. As a result of the autism they understand 1 of every 5 words that is said and it takes them 90 seconds to work out what that one word is. The child has normal intelligence and reads above grade level. How do you intend to include the child in the class discussion, so they can participate? Response – give them an aide – what do you want the aide to do for them?
The vast majority of children with vision impairment are not supported through the program for students with disabilities. Instead they are supported through the Educational Vision Assessment Centre and for those who are assessed as having less than 30% corrected vision through the State‐ wide Vision Resource Centre. This provides access most importantly to visiting teachers for the vision impaired. So specialist teachers in teaching children with vision impairments go and visit them and work with them in their mainstream schools, teaching them, supporting and providing advice to the teacher(s), etc. They also have access to specialist programs 2 days per team to teach the expanded core curriculum. Only those assessed as having less than 10% corrected vision are eligible for access to the program for students with disabilities, ie funding for an aide. Truth is we could very easily reduce the number of children with autism getting aide funding and instead use that to provide specialist and expert advice, even if only for a cohort of students with autism, like it is done for those with impaired vision.
For those are Deaf or hard of hearing we do have access to visiting teachers and also for some the program for students with disabilities. We also have what are referred to as Deaf Integration Units. They are funded for a full time teacher of the Deaf and a full time AUSLAN interpreter for every 4 students eligible for it. This allows them to have access to specialist support on site. It allows teachers to walk down the hallway at lunchtime and say, this came up, what can I do to support the child. The children are included in mainstream classes, but can be removed for intensive support in one on one or small group situations in the Deaf Integration Unit for up to 1 hour per day. Such things have been done for children with autism in the UK with amazing results, not just in terms of academic outcomes, but also the level of acceptance by their peers and the children’s ability to cope in the world at large, being able to move them onto further education, work, etc., was all done. Two books have been written about it by Matthew Hesmondhalgh.5 6
Back to the child in the class who can only take in one of every 5 words, we can provide what is referred to as live captioning, someone types what is being said and the child can read it on a screen. They can usually take in what is said when they read it. It is having to translate verbal information that is the biggest problem, yes they still have to process things they read, but it is much simpler for them. Not all children require this, the vast majority do not. Others are not able to work at the standard curriculum level. The costs are huge, but if used in something like a deaf integration unit, where a number of students access it at the same time, then things are very different, and it becomes affordable.
I do not want to deny what the government has done to try and better support those with autism, including offering professional development training to teachers, but no one would consider offering teachers 20 hours of training on what is blindness and then expecting them to know how to teach a child to read braille. Yet as stated earlier on they can at least imagine what might be happening for that child. Very few teachers are not incredibly committed to trying to teach and support all children but they are not understanding what is happening for that child, and are equally on their own. At most we give the child an aide. The aide is out of their depth too, trying to teach the child, it not working, so the response is I’ll do the first one to show you what to do. When that doesn’t work, I’ll
5 Hesmondhalgh, M & Breakey, C. (2001). Access and Inclusion for Children with Autistic Spectrum Disorders. Jessica Kingsley Publishers, London. 6 Hesmondhalgh, M. (2006) Autism, Access and Inclusion on the Front Line: Confessions of an Autism Anorak. Jessica Kingsley Publishers, London.
show you how to do another one, and in the end the aide does all the work. Teachers start out incredibly committed and inclusive and the first kid with ASD they have they work really hard on, do all the professional development training, seek advice from everywhere and keep working at it, finally after 6‐9 months they get some sort of order going for the kid, and they feel proud of themselves. The next year they offer to take the kid with autism and think I know what to do now, put in all the strategies they worked out for the last kid and 90% of them don’t work because this kid is so different, so they have to start all over again. They get very worn out and sick of them very quickly. The odd social skills only make things even worse.
People are very quick to blame teachers and yes some things cannot be excused, but equally if the child is not being taught anything else, how does that help anyone. Examples are given of children asking questions repeatedly because they do not understand. Teachers tease them, and then exclude them, neither of which is acceptable.7 Equally though do we really think it is good to teach a child to just keep interrupting everything because they do not understand. Imagine if someone interrupted every few words while one of you was speaking in parliament. Imagine doing that in any public lecture, any workplace situation. What would you do, you go and talk to the person later and ask them to clarify it all with you. Children with autism will not learn those things naturally or problem solve it out, they need to be taught them. Many will have memory problems and need to be taught to write down questions to ask later. Equally even the most supportive of other kids can get really sick of a kid you keeps interrupting and destroying the whole lesson, and not just once, but continuously. They just talk to the teacher later, why does this person not. It is destroying the whole class for everyone. Yet all we hear is the child’s rights, or on the other hand the child needs to learn not to do it. We either defend what the child is doing and say we just need to accept them as they are, or we teach them not to do it something that was done to me by smacking me, but no one teaches them what to do instead, so all the child does is to sit there not understanding but saying nothing, which is what I ended up doing and so many others do, and continue to do to this day. We then say they have learning problems and cannot learn, but that is not always the case. Imagine a blind child, they cannot see and so keep bumping into things. We can say it is their right and so pad up all the walls to protect them, or we could tell them not to do that to protect them and others and get them to sit quietly in the corner, or we could do what we do and teach them to use a white cane and navigate in a world not designed for them. No one would consider doing anything else for a child with another disability than teaching them how to function in a world not designed for them, so why are we not doing the same for people with autism.
The tertiary education system is completely ill equipped for those with an ASD and how to support them. The ideas that are given assume that they are incredibly high functioning so those without that level of functioning are simply excluded or more likely blamed for not having reached that level, not being able to do things, etc.
Housing, we spend so long talking about disability group home type housing and completely forgot the needs of anyone who does not require that. People with autism rarely cope well in the standard group home model which is 5 residents; they often require individual or 2‐3 people. Getting 2 adjoining units and putting a staff person in between can work well. Only a small percent will need 24/7 support. Others will need 7 day a week support and others less than that. We need a variety of
7 http://www.abc.net.au/news/2016‐01‐28/autistic‐students‐bullied‐survey/7119602
housing options, fully supported, semi‐independent and independent. Those with profound behavioural problems have added complexities and often need purpose built properties. Some of those will need to live alone in order to accommodate those behavioural difficulties, but some become too lonely in such an environment, get sick of being only around paid staff, and their behaviour can be exacerbated by the isolation.
2 years ago I finally obtained public housing that was modified to the level that it could be given DHS guidelines to meet some of my sensory needs. Not something that was easy to achieve, but something I am incredibly grateful for.
Workforce Issues
People do not understand autism and cannot even imagine what it would be like. Training of everyone is essential, at least in basics. This must include all medical professionals, all allied health professionals, the teaching profession and especially the disability services industry. They need to understand that these people do not pick up social cues and just because they can speak, does not mean they can always understand what is said. Those things at a minimum must be understood. Positive Behavioural Support also needs to be understood especially by those working in the education and disability services sectors.
People talk about Certificate IV being the minimum training requirement, but when it has been watered down to nothing by private training providers one really has to question whether it is of any use at all. It used to be a 12 month full time course, now people are doing it in less than 10 hours. Of much more importance is real quality training in what autism is and how to support people with autism, how to work with the communication difficulties associated with autism and positive behavioural support. They must have access to ongoing supervision from people with extensive experience in autism.
Impact of the NDIS
Unless and until the NDIA understands autism then nothing at all will be of any real benefit to anyone. I have in the last few days yet again had someone from the NDIA tell me I had no excuses, I needed to stop pretending I had a disability, since I could speak, then clearly I can understand as well and I can hardly expect to improve my social skills if I do not simply practices more. Everyone can pick up social cues if they just spend time around people, I was told. I am not the only person going through these experiences. Equally they do not comprehend those with behavioural problems and why autism cannot be cured. They simply want everyone to join a group and make a friend. Perhaps they should be writing a manual on how to cure autism, since they seem to believe it is not only possible, but compulsory. Without access to planners and senior managers that can understand even the basics of autism, nothing is going to change. They cannot imagine what autism is like and so blame the person and in many cases the family as well.
Research into ASD and its prevalence
Generally speaking it is agreed that we have a prevalence rate of 1 in every 100 people in Victoria, however it needs to be remembered that between 75 ‐80% of those are ASD level 1 or Asperger’s. The rate is increasing, not at the severe end, but on the other end, as we keep broadening the
boundaries of where ASD begins and where it ends. Researchers have agreed that there is no clear boundaries8. Tony Attwood has said that everyone in the population has autistic tendencies. It is simply where we draw the line. However if we keep extending the boundaries as we currently are, then at the current rate by 2034, 100% of the population will have autism. 9
Prevalence within the US is now at 1 in every 6810
Prevalence within South Korea is now at 1 in every 3811
While there is a heap of research going on into ASD, much of it is very low quality; they never question how a person was diagnosed or seek to confirm such a diagnosis.
Community Participation
Work – so little is done in relation to this. There is some research about how can we get people to understand their strengths so they can go and apply for jobs. Another is setting up a supported employment service for those with university degree’s. When that is all that is being done by the so called experts, then one really questions what they understand about autism.
Hewlett‐Packard is seen as doing this wonderful thing by employing people with autism, problem is they are not employing them in their standard workplaces, but setting up special ones for those with autism, i.e., supported employment services. If we are about inclusion, how can excluding people be good for those high functioning, many with university degrees? If we cannot get people with high functioning autism into open employment and how anyone can call this open employment is beyond me, one can hardly expect the rest of the community to accommodate them. When the supposed autism community sees this as world’s best practise, by saying we don’t think you should be in the community, then what do they think of us. How can they claim to be trying to support people with autism to live valued lives if they do not even believe that we belong in the community?
People with autism have no trouble knowing what we are good at, we know our special interest incredibly well, it consumes our whole lives. The problem with employment is that no one has ever taught us adaptive skills, or how to compensate or work around our disability. I cannot change my autism. I can however learn skills to manage many of the difficulties I face with assistance; information can also be given to others so they can support me, when things cannot be modified by me alone. No one would consider telling a blind person, just focus on your strengths and everything will be OK. Nor would we say it to the deaf or the like. What we do provide is expert advice and guidance on how to live as a person with a disability in a world that is not designed for them. We provide them equipment and specialised training and help their employers to know how to support them. But with autism the attitude seems to be that if we just pretend the disability does not exist then the person will be fine, the reality is very different.
8 https://www.theguardian.com/science/2016/mar/21/autism‐spectrum‐has‐no‐clear‐cut‐off‐point‐research‐suggests‐nature‐genetics 9 http://www.westernautisticschool.vic.edu.au/media/uploads/page/ASD Changes in DSM‐5.pptx 10 http://www.cdc.gov/ncbddd/autism/data.html 11 http://www.economist.com/news/briefing/21696928‐children‐rich‐world‐are‐far‐more‐likely‐be‐diagnosed‐autism‐past‐why
Disability Employment Services are completely ill equipped to support those with ASD, no one has any concept of what reasonable accommodations might be for them and how to assess and provide for those things. No one has even considered what can be done to support people to find ways of coping with executive function deficits, we are just told to try harder or pretend they do not exist. Same with the social and communication deficits. If employers are given support and advice on how to work with those with ASD then they show they are more than willing to and are able to do so1213
Recreation – sport is incredibly difficult for those with ASD and for some it will be impossible. Team sports by their very nature are very chaotic and people with ASD due to the nature of their impairments are not able to predict what other players are going to be doing, as the rules and actions are in their heads. People with ASD do better at solo sports like swimming, dancing, self‐ defence and the like. Some might cope with tennis, it is one person in a box with clear rules and lines, but for some it would be too difficult.
Many say the world simply needs to become more accommodating of those with ASD and in some respects this is true, but what happens for others is not always that simple. Many people who are severely affected make loud sounds which can be annoying for others. Some say the rest of the population simply needs to accept them. But what does that mean for others with autism. I have gone to my local pool at a very quiet time because I cannot cope with noise, crowds, being splashed, etc. I love swimming. A disability support worker had taken a client down who was making loud sounds and while I understand it is the clients’ disability, it was acutely distressing for me, due to my sensory issues, to the point that I required assistance to leave. I hear all about their rights to do things as their disability causes it, but no one thinks about my rights. Why am I prevented from being in such places, due to them, what did I do wrong, what do I do to annoy people?
Autism is an incredibly complex disability, being able to be a part of the world is not that simple, equally though no one is really willing to consider the individual needs of individual people or what can be done to support them. Everything is divided by simply leave them and accept them as they are, or cure them. What is really needed is something in the middle. Autism cannot be cured, it is a severe disability for most people and they do need help and support and modifications and accommodations.
“If we listen to what autistic people tell us about autism, then one of the first things that we learn is that even though they may describe a war, or a battle with autism, autism in itself is not the problem. Their relationship with us and the environment is.” 14
12 Hesmondhalgh, M & Breakey, C. (2001). Access and Inclusion for Children with Autistic Spectrum Disorders. Jessica Kingsley Publishers, London. 13 Hesmondhalgh, M. (2006) Autism, Access and Inclusion on the Front Line: Confessions of an Autism Anorak. Jessica Kingsley Publishers, London. 14 Breakey, C. (2006) The Autism Spectrum and Further Education: A Guide to Good Practice. Jessica Kingsley Publishers, London.