Photo shows three children climbing a tree with one child in the middle of the tree, and two smaller children attempting to follow

When support comes at a price

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.

Photo shows two young children asleep beside each other, arms touching, one child has rolled in towards the second child who is holding a red tag blanket.

Photo shows two young children asleep beside each other, arms touching,
one child has rolled in towards the second child who is holding a red tag blanket.

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.

Photo description: Briannon holds one of her sons in her arms, he is nestled in to her back of head facing camera, and she is kissing him

Photo description: Briannon holds one of her sons in her arms, he is nestled in to her back of head facing camera, and she is kissing him


[1] Nick Walker defines neurodiversity and the neurodiversity paradigm here http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

[2] 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

11 replies
  1. Anonymous
    Anonymous says:

    We also homeschool, a decision made during my Dip Ed year, before we had kids and long before the ASD diagnoses. The judgement from people who mean well but simply see everything in clinical terms is frustrating. "Why don't you put them in school to give yourself a break?" with the assumption that school would be an easy and harmless transition, and without any understanding of why we chose, and continue to choose, homeschool. Without any reflection on the incredibly high rates of medication which goes on for ASD kids to be able to attend school. Apparently the "need" to "socialise" in this one narrow way comes before every other goal our children have or we have for our children.

    And then the strings which stop us from accessing in-home respite care or almost any other help. Ugh! People seem to think that removing my children to another location (usually school) would be the best way to help, instead of applying help in the way which would actually work best for our family. So instead I am going to spend some of my carer's allowance and my assistance for isolated children allowance to hire an occasional cleaner so I can focus on the stuff my kids need. (BTW, do you know about "assistance for isolated children"? It's quite helpful). I'm quite blessed to have allied health professionals who are immensely supportive of me homeschooling, but they still don't really get it, try as they might.

    I guess we should be used to the judgement by now – on birth, feeding, education, parenting style. I'll stop now before I get depressed about how much those judgements limited the support available back then too.

    Reply
    • Anonymous
      Anonymous says:

      Thank you for understanding and I am sorry but glad in some ways, that we share the same journey. Yes, the idea that our children who are vulnerable and need love, respectful, gentle, parenting and support in sensory-friendly environments, would be better at school, is bizarre. And yes, an easy and harmless transition?! You nailed it on the head. Thank you for your solidarity. B x

      Reply
  2. Anonymous
    Anonymous says:

    Sad but true. I think all people are like this, if someone asks for help, they want to know exactly what they're going to do with it. Then they want to micromanage it. Like giving a homeless person money ("what's he going to do with it?"). or a young person. When I was a kid, my dad taught me to never ask anyone for anything, because there were ALWAYS strings attached, even if you think there are not. and it's really true. Even people with the best of intentions have a tendency to wind up feeling entitled to judge and express opinions if you ever accept help from them. It kind of automatically makes them feel superior, I think.

    Reply
  3. Anonymous
    Anonymous says:

    Thank you, it is so hard to ask for help too, especially if you are proud like me. And because I am a social worker, this experience I hope, will forever influence my work with others. Your dad is wise.

    Reply
  4. Lucy Moore
    Lucy Moore says:

    CONTENT WARNING

    Instead of scrutinizing Autistic homeschooling families like yours, these detractors should be scrutinizing the actions of the shiny, prominent Fundamentalist Christian homeschooling families such as the Duggars on "19 Kids and Counting" and others who homeschool under associates of the Fundamentalist Christian homeschool movement (i.e. HSDLA). On the website Homeschoolers Anonymous, "graduates" (er, survivors) of these programs detail all sorts of abusive practice, among which a sort of "ABA" for ALL kids is highly prominent, along with misogyny and other forms of prejudice. I won't go into further detail here as I don't like to level all horrors at people with both barrels and my autistic self can handle such stories much better when I can click the link and explore them at my own pace. I know some people do not like to hear details (hence the content warning) but I for one did gain a few bits of insight into what happened to me in the ableist Special Ed system thanks to one of the Homeschoolers Anonymous posts. I bet I am not the only traumatized autistic who would derive a similar kind of benefit.

    Anyway, it is the Fundie Christian homeschoolers (and others whose schooling follows similar principles) who deserve scrutiny, not you. But I guess that is Christian Privilege and ableism at work. Hooray :-(.

    Reply

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