Dear Sir/Madam,
I would like to make a submission to the Australian Parliament regarding services and support for autistic people.
I have a 22 year old son who is severely autistic. He is non verbal and has intellectual disability. He is not even able to complete an IQ test, such is the level of his disability. My son is extremely vulnerable because of his disability and requires one on one care around the clock.
I was prompted to add my voice to the submissions being collected because of the many gaps that we have witnessed in the care and education of my son and other young people with autism over the past 19 years since he was diagnosed.
I would like to think that early intervention and education and employment for individuals with autism has improved, but sadly I do not think this has really had the resources required to make a huge difference.
When we were seeking a diagnoses initially we visited a couple of paediatricians who sadly displayed no empathy whatsoever when letting us know that our son had autism. One smiled as she gave her diagnosis, the other made a cruel joke about how my son’s behaviour was definitely ‘not normal’. Dr’s/GP’s, specialists should have mandatory training in what autism is and how to deliver a diagnosis to parents that is empathetic, helpful and supportive.
Early intervention was sought and we discovered that at the time the only place where it was government funded was Perth in WA, so that’s where we went. It was a refreshing change from Melbourne and we were supported by a wonderful group at the Autism Association, receiving speech, OT and Psychological services.
Of a few hours a week was not really enough and I believe NDIS now funds Early Intervention. This is so vital in the early years and should be available to all children who are diagnosed. Sadly, I believe there are still long wait lists to receive assistance.
Our experience with the education system has been good and bad. My son attended a mainstream Catholic primary school in Perth (in Melbourne a child with autism as severe as his would never be accepted into a mainstream school). My son thrived in this little Catholic school where the principal did all she could to include him in a regular classroom with a wonderful ed support assistant and some teachers who went above and beyond their regular training to learn all the could about autism and the best ways to engage and teach my son.
Once he reached 9 years old the gap between him and the other children had really widened so I moved him to a Special Developmental school. His behaviour deteriorated and he assaulted teachers and other students. He no longer spent any time learning
to read or spell. He spent a lot of time outside the classroom having a ‘break’.
We returned to Melbourne and I thought things would improve if my son went to an Autism specific school, one where teachers would know how to teach children with autism and have the best strategies to engage them. How wrong I was - my son spent almost all day outside in the courtyard or breezeway because he needed a ‘break’ from the
classroom. Nothing useful was learnt, no lifeskills, (I had given
up on them teaching him spelling or reading by now).
There was a psychologist, OT and speech pathologist at the school but no one seemed to be trying to assist with working out a strategy of how to best teach my son.
I moved him to a special developmental school that was much smaller, had less students and was closer to home. While he had a lovely teacher for the two years he was there, I received a nasty letter from the principal (I can supply if required) itemising all of my son’s ‘behaviours’. These behaviours were all due to his autism, so I am not sure why a school for students with disabilities would send a letter like this home, a list of all of the disruptive behaviours of a student who is behaving as he is because that is the only way he can communicate (he is non verbal).
The only reason I can think of is because they did not want him to attend their school. I had no where else to send him - I could not send him to a regular school, they would not accept him. Once again he spent a lot of time outside - at least this school had a nice playground for him to be in, but I would rather he learnt something useful! He is definitely capable of learning.
He finished school and I was told that no Day Program would accept him due to his behaviour. This totally floored me - how could organisations that are designed for people with disabilities discriminate against people with disabilities?! They can pick and choose it seems!
My son was offered funding (Pre NDIS) to have one on one support Monday to Friday during the day. It was very difficult to find an organisation that could provide that support. Support workers came and went, some were totally untrained and unreliable, others were ok.
Because my son did not attend a Day program, there were no activities that he could attend. I had to research options and find things for him to do during the day that would get him out into the community in a safe way.
Once NDIS rolled out we received funding for a support coordinator. the first SC we had was totally useless. She was never available and did not help us find activities for my son to do in the community. Eventually I found a good SC who only lasted in the job one year!
My son was fortunate enough to be eligible for SDA (housing). The category is robust. We have spent two years trying to find an SDA provider who was willing to assist my son with finding housing to suit his needs. What we found was that SDA providers were only providing SDA in the High Physical Support categories, not any others. The reason for this was that they receive higher returns with the High Physical support category. With the robust category they have to provide a house (not an apartment) and there is the added concern that property could be damaged.
The robust category would be the category of SDA most likely to be funded for someone with severe autism. The fact that it is the category that has not been touched by investors/developers once again shows that the rights of people with autism are being ignored. These are the people who might be non verbal, their families may have relinquished them (if they are in the very severe category) so who will advocate for them?
We have been fortunate to find (eventually) an SDA provider who is going to build a home for my son and another NDIS participant, but this has been after a solid two-three years of contacting over 50 disability organisations, many of whom said that building Robust was a problem and that they would not be providing this sort of housing (once again picking and choosing which disability to help- and it’s not people with autism).
My letters to the Minister and my visit to my local member of parliament have not really been very successful. All I received was a letter from the minister stating all the wonderful things he was doing for disability housing. Maybe he needs to look at the figures in the last quarterly report of what categories of disability housing have been built in Victoria since NDIS rolled out.
There are many people with autism who will not receive SDA and they require support with housing as well.
NDIS has assisted my son, but there is more work to be done, particularly for participants who are on the severe end of the spectrum. They deserve more than babysitting - all are capable of participating more fully in education, employment and the community if they are properly supported.
Teachers should receive more training in how to teach students with autism, Doctors and medical professionals also need training in what autism is and how best to treat patients with autism and deal with their families in a caring, empathetic way.
SDA sounded like it was going to be amazing - let’s make this a reality by resourcing it correctly, taking into account the cost of land in metropolitan cities where a lot of people with autism would like to live (next to family and services).
My son will probably never work, but there would be many people on the autism spectrum who are more than capable. It would be great to provide potential employers with support to take them on.