Let me tell you about a family in Australia, two parents and three children, a 4.5yo boy and 2yo twins.
After much soul searching, research, thought and discussion, the family decide to homeschool their eldest child. One of the parents stays at home and commits to trying out homeschooling for a period of time. They will find a way to make ends meet. The twins are home too, they are only just two, and there is no need for them to go to daycare with a parent at home; plus they have a special connection with each other and their older brother.
The children enjoy fairly typical kid things. They are active children and love to climb, and dig and jump. They paint and build and read and draw and ride bikes. Sometimes they watch a lot of Disney movies.
They’re all introverted by nature, like their parents, and so although they go to playgrounds, and homeschooling meetups, and playdates with friends, they also really enjoy a lot of time at home with one another.
It all sounds fairly typical, right? Young children, at home with their primary caregiver, a few playdates and outings, lots of time together. You might ask a few questions of the parents about their choice to homeschool, but, ultimately, it’s the family’s choice. Homeschooling is a legal and increasingly popular option. Most people wouldn’t hold this family up to much scrutiny and they would be living and playing in the suburbs like any other family.
That is, unless you are my family, or like my family.
We are Autistic, with disabilities. Two of our children have clinically significant anxiety. All of this contributed and factored in to our considered decision to homeschool, particularly given the paucity of funding and poor outcomes for disabled children in Australian schools. We are allied health professionals and importantly, our children’s parents. We know our children intimately and are competent decision makers for our family.
Recently, we contacted our local government disability service seeking support. And this is when things started to get unsettling. Before anybody asked us what support we were seeking, they sent a team of three allied health therapists to assess my children’s need for early intervention therapy. The medical model of disability seems especially pervasive here. The primary support families are offered is early intervention therapy by allied health professionals, aimed at intervening in the early childhood years to achieve maximum impact, with a desired outcome to change the developmental trajectory so that Autistic children are more like their neurotypical peers.
My family doesn’t subscribe to this pathologising framework and instead choose to value the neurodiversity paradigm¹ and social model of disability². My children are wonderful being their Autistic selves and don’t need therapy to cure or treat them.
I started with some polite “we don’t need a lot of therapy right now, we need support to join in activities and visit public places that other children enjoy, and support for our home to be safe and accommodating for Autistic children”. When this failed, I wrote a letter of complaint. And they sent a case manager to see me.
This is when things went from unsettling to infuriating.
One of my two year old twins doesn’t have a formal diagnosis. One of the first things the case manager noted is that Miss M “is a cool cucumber”
“We believe that she may be Autistic,” I explained, “she has always needed a lot of downtime, and been wary of strangers since she was a baby”.
The case manager ploughed on, suggesting we needed to be careful to ensure Miss M isn’t copying her Autistic siblings’ behaviours. Is Miss M socialising with typical peers? Will she go to daycare? Is she going to go to school? If she does, and she doesn’t play with typical peers beforehand, her ‘behaviours’ might be noticed and she might get a diagnosis.
“You can’t catch autism,” I hissed (and so what if you can? I thought).
Sensing my growing discomfort, she started trying to explain herself. Lots of talking about how her team always like to take in to consideration the needs of ‘sibs’, and about how Miss M only has her Autistic siblings to learn and copy from. “Children learn from their environment” she ‘splained.
This is what hurt the most. My children learn so many things from each other, and I see it all as positive. Miss M absolutely adores her twin and older brother. It hurt because of the awful assumption that she could only learn negative ‘behaviours’ from an Autistic sibling; that Autistic ways of being aren’t desirable for a sibling to be exposed to; that my daughter would benefit more from spending time away from her twin and big brother.
My children have a wonderful interdependent bond. Over the decades, as support services come and go, I hope my children will have one another. That is what I value and what we foster as a family, healthy relationships and interdependence.
And just while I was feeling particularly vulnerable and defensive, this happened… The last thing the case manager said before she left was that she could only apply for carer support hours for my children if she could write that it was to support Miss M to engage in activities with neurotypical peers, and my Autistic sons to begin to reconnect with other formal supports such as daycare, kindergarten and school.And there you have it. Support comes at a price.
Support comes with value judgements and assumptions about the best interests of children in families. Completely typical family situations (such as young children staying home with a primary caregiver) are questioned and held up to scrutiny. Decisions that our community would generally respect and trust me to make as a parent that knows my children best, are questioned when professional helpers visit. Considered choices become ‘lifestyle choices’ when government funding comes in to play, and children and families are pushed to make decisions that cost governments the least and fit best with the support offered.
My desire is for my children to have healthy interdependent relationships, a safe home environment, a good education, and participation in their community in the way they choose.
I think as a mother, I would generally be supported in these aspirations.
But when we are Autistic and disabled we have to go to battle for these typical aspirations, for decisions I make to be seen as choices made in the best interests of my children, and not as ‘lifestyle choices’ because they’re inconvenient to a government department.
I understand why so many Autistic people give up and choose not to access this support-with-strings-attached, even if they are forgoing support that may benefit their quality of life.
For now, I’ll keep fighting for my children and defending our ordinary aspirations and my children’s rights. I’ll write another letter of complaint, and then get back to the important and ordinary business of finger painting, cubby houses, Disney movies and cuddles.
 Nick Walker defines neurodiversity and the neurodiversity paradigm here http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/
 The social model of disability is supported by the UN Convention on the Rights of Persons with Disabilites “Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” http://www.un.org/disabilities/convention/conventionfull.shtml