Our seven-year-old son was diagnosed with Autistic Spectrum Disorder level 3 under the DSM5 criteria at age 2 and a half. At age 7, he remains completely non-verbal (although he does vocalise non-word sounds repetitively), understands only a few regularly-repeated verbal expressions that we know of, is fully incontinent, and eats about five foods on a regular basis.
At his age, the topics to be included in submissions to your committee that I feel apply to him are: healthcare and education.
Regarding healthcare, it’s frustrating that the NDIS seems to offer such inconsistency with plans offered to various participants. For us, I was unsuccessful in arguing that my son’s restricted eating meant that he needed dietitian visits specifically funded under his plan. I’ve heard of people with autistic children about as “severe” as our son receiving much more funding in their plans by a factor of over five times more. It seems to be to do with how well your child’s treating professionals and any specialised advocates you are successful in obtaining help from can put your case forward.
It seems that many health or education professionals are unaware of the realities of daily care for your child and the very real effect of having your dreams for child’s future not only obliterated, but then also dealing with concerns like - who will look after my child satisfactorily when I can’t anymore? In relation to the realities of daily care, it’s not necessarily do-able to obtain a blood sample from a seven year old who doesn’t understand what’s going on and is very self-protective. And yet, we are blithely instructed to somehow get that done. In relation to my son’s eating, the teacher says he’s “not that skinny” (he is). Of course, you can’t mandate that health or education professionals know emotional responses they have usually never experienced themselves. I do feel, though, that more thought needs to go into the way families are affected by the care needs of their family members with “additional needs”. Parents, who are dealing with the daily concerns of looking after their autistic child/ren, need to be respected for the knowledge they can bring to the topic.
Regarding education, besides our son refusing to eat or drink ANYTHING at school (hence my frustration with his teacher’s apparent lack of concern), we also feel that the curriculum that is offered to severely intellectually disabled students like our son is just “watered-down mainstream” learning. It is too academic and not focused on the particular needs of the target audience. I volunteered in an upper-highschool-level classroom at my son’s school last year. They were being taught how to use (fake) money and doing roughly the same activities as the ones sent home with my seven year old during the recent COVID lockdown homeschooling period - alphabet videos and the like. This tells me two things: 1. The students aren’t progressing in their schoolwork as they get older. 2. They are being “taught” concepts they will not be able to use ever. None of the students I saw could accurately count to three coins, let alone necessarily understand the concept of a financial transaction. At another school my son used to attend, they were building an area like a house for upper-highschool-level students to learn how to keep house - do the laundry etc. I can see this working out to be a lot more useful for students. I know some parents will disagree with us and say they don’t want their children “dumbed down” at school. Even at a special developmental school for students with IQs under 50, there’s still a huge range of abilities in those students, and parents will have differing opinions about what’s best for their child’s needs.
Kids with autism have unique learning challenges compared to, say, kids with Downs Syndrome. Learning is so dependent on understanding social interactions - imitation is one key way that people usually learn, with verbal explanation being another. Both of those things my son struggles with due to his autism. But in the western suburbs of Melbourne, we don’t even have the option of enrolling him in an autism-specific school past Year 3. When we tried to enrol him at Western Autistic School in Year 1 at least, after having completed his Prep year elsewhere before we moved, we were told they couldn’t enrol him due to space limitations at the school. In any event, our son has regressed compared to what he was capable of academically when he was about 2 or 3 years old.
There seems to be a big difference between different people who are all classed as being on the autism spectrum. Who are the people who are training to help kids like our son? His allied health therapists seem to have more experience dealing with kids who are more able than he is. Research studies I’ve seen asking for autistic kids to participate ask for verbal kids with a higher IQ than him. Who is studying what will work for ? And back to the NDIS, why are ABA or other intensive therapies not standard for severely disabled autistic kids?
We will continue working within the frameworks of what’s possible to provide our son with the best future possible. This will look like part-time homeschooling for now, continually trying to find social connections for him and us, and planning for a micro business for the future so that he can have a part in our community.
I will also say that, in terms of community participation, members of the public have been outstanding in recognising our little guy as having special needs and even asking if they could help when we’ve had dramas in public. If anything, this gives me the greatest hope that he will have a good life.
Therefore, improvements that could be made include:
-
Scientific research into programs that assist ALL presenting levels of autism, not just those for whom the diagnosis has less of an impact on language and intellect
-
More parental involvement in development of special school curriculums and room for greater individualisation of students’ goals
-
An autism-specific school in Melbourne’s west that goes to Year 12, like all the other autism-specific schools in Melbourne do
-
Better access to ABA therapy through NDIS for autistic kids
-
More recognition that families are now taking on the role that used to be done by institutions, and it’s hard work at times. It’s not just normal “parental responsibility”.