One question that we often get asked is about diagnosis of autistic kids. Specifically, parents want to know if they should seek an official diagnosis or not. This is a complex question to work through and one that needs some further unpacking.
As parents of autistic kids ourselves, there was a time where we to grappled with this same issue. What is to be gained by our children being diagnosed autistic? Let’s explore that.
Being officially diagnosed as autistic might make our children eligible for funding that can be used to support their needs. This varies from state to state and country to country, but in many cases, a diagnosis does open up some opportunities that may not have been there previously.
Being officially diagnosed also might lead to more understanding on behalf of parents, family members and teachers, which could lead to more compassionate approaches to being with our children.
Most importantly in our view, being diagnosed gives our children entry into a community of other autistic people, which fosters feelings of self acceptance and belonging.
It’s also true that there can be a shadow side of pursuing an official diagnosis. Once it’s on the medical chart, there’s a potential for less progressive folk to treat our children as broken or damaged due to them being autistic.
Once our child is diagnosed, we may feel pressure to pursue a number of interventions that we aren’t so sure about and choosing not to pursue them could lead to more pressure from professionals.
The process itself can mean carting our kids off to a number of different therapists and this can be stressful for them.
So it’s not an easy decision and we recognise that.
There’s another option though, one that many adult autistic people have chosen and that’s self diagnosis. It’s a bit of a myth that only medical professionals are able to correctly interpret the signs of autism. If you do some research, you too can have access to the exact same tests that the professionals use and they’re pretty easy to work through. If funding is not a result of a diagnosis in your area, and you feel that there is not much to be gained from getting an official diagnosis, you can still give your child entry to the autistic community, by deciding yourselves, as a family, whether you believe your child might be autistic.
That’s super controversial right?
Do you know if you your child is red haired or brunette?
Do you know if they like to learn through instructions or by doing it themselves?
Do you know if they experience life as a boy, girl or in a more non-binary way?
Do you know if they are autistic?
We bet you do. Especially if you’ve read some literature, spoken to friends with autistic kids, watched other autistic kids, maybe even read the entry in the DSM (the manual that outlines what you need to receive a diagnosis of autism).
We’re not suggesting you wake up one day and say ‘hey kid, you’re autistic because I said so’.
We’re suggesting that it’s not rocket science to diagnose autism. In fact, it’s clearly set out in a fairly tick box fashion in the DSM. You could always make an informed decision that you think your child is autistic, let them know this and support them as they think through this for themselves as they become older.
You’ve spent many, many years with your child and a medical professional is likely to spend an hour or so watching your child and then going through that tick box system – you may be qualified, as their loving parent, to make your own determinations and share what you think with your child.
Who’s freaking out?
That’s ok if you are. It’s a pretty radical idea in a world where we have become less and less trusting of our own intuitions, knowledge and parenting skills and more and more dependent on outsourcing to ‘experts’.
It’s worth nothing, that at Way of the Cactus, all of our children are professionally diagnosed, as are two of the adults. The other two adults are self diagnosed. So we are not against official diagnosis.
But we do recognise that it’s not for everyone and it does have a shadow side. So if your family decides that the official path is not for you – that’s okay. You can still give your child access to their community by doing some research and using your own skills and intuitions.
The autistic community welcomes anyone who believes themselves to be autistic, regardless of the route they took to decide so.