I always think I’ve written something already about any given topic only to realize there is more to add. So it was the other day when asked about advice for a parent whose child was just diagnosed with autism. This is a question that comes up often and always when asked I hesitate and here’s why. For every child that might respond to various “interventions” the way my daughter did, there will be countless others who will not. The therapy may be worse or better. The child may have different sensory issues, they may be voracious readers, hyperlexic or they may not be able to see the printed word because of visual issues, the letters may swim on the page until a different background is found or some other tweak is done, which allows everything to stay still.
There may be auditory issues that my daughter does not share, tactile, physical issues and the list goes on. So what to do? How does a parent wade through all the opinions? How do you find a way to quell your fear, respect your child, ignore that list of all that’s wrong and find the things that will help your child flourish?
For me it boils down to two essentials. The first is to presume my child competent. I’ve written about this concept a great deal, but here are a few posts which talk about what that means – ‘here‘, ‘here‘, ‘here‘ and ‘here‘. Presuming competence is very much a work in progress. What I once presumed as “competent” my daughter has shown me didn’t go nearly far enough. We do the best we can with the information we have. But anything intended to “help” my daughter, anyone who is going to be spending time with her, must understand the concept and be committed to putting it into action. This includes, speaking to her and not about her in her presence. It means, even if the child shows no sign of understanding, even if the child has no spoken language and has never written a single word, we assume they can understand more than their bodies and gestures and utterances indicate.
Presuming competence has evolved for me and is helped by keeping my fear, judgment and assumptions checked at the door. I cannot presume my daughter capable if I am simultaneously engaged in a running list of all she’s doing wrong. I cannot practice a presumption of competence if every interaction I have with her is really an ongoing test where I’m insisting she prove herself to me. Presuming competence is a life long practice and it is has far-reaching implications for not just my daughter, but all human beings I come into contact with.
Presuming competence is key, without doing this, everything else I do, no matter how great my intentions, will fall flat. I have to believe in my kid. It means that I speak to my child the same way I would speak to any child their age. It means I approach my child believing in their ability to learn. It means I believe they can and will learn. It means they will communicate, I just have to find the best way to support them so that they can and it may not be with spoken language. It means any therapy, no matter how popular, must be based in presuming my child competent, respecting my child’s process and treating them with the same respect I would insist on for anyone coming into contact with my non autistic child. It means I have to do the inner work regarding what I believe, notions of should and shouldn’t, entitlement, prejudices, and whatever ideas I may have about my child and who they should be. It means I approach my child with love, consideration, respect and curiosity.
I have come to believe that services, those services that everyone talks about and that are centered on our children, should include services for parents. Early intervention for parents is crucial and much needed. We parents are often in greater need of help and support than our children. Good quality respite care, therapy for us, the parents, designed to help us cope and sort through our messy emotions so that we are in a better position to be there for our children. I needed support from parents who’ve traveled the path I now found myself on. No parent should ever feel the kind of fear I once felt. Which means we have to change the current conversation surrounding autism if we are going to help our children. No one is helped by having their every flaw (which is completely subjective, by the way,) scrutinized, both publicly and privately. There are ways to get support and the help we and our kids need without demonizing our children and talking about them in ways we would never allow people to speak about our non autistic children.
Which brings me to the second essential thing – Autistic people. It is imperative that all parents be given a list of blogs written by Autistic people who are describing their experience of the world. This has to be essential reading while we figure out a way to put into place advisory programs made up of Autistic adults who are able to help parents understand their children. These must be paid positions just as all other people involved with early intervention are paid.
We need mentorship programs of Autistic people mentoring our kids AND mentorship programs where our Autistic kids are mentoring younger Autistic and non Autistic kids. One of the most valuable relationships my daughter currently has is with a little boy who shows no signs of being Autistic himself. But they enjoy being together and the boy’s parents encourage their relationship. An inclusive society is key as we move forward.
On the Resources page of this blog I’ve put together a fairly extensive list, beginning with non-speaking Autistic people’s blogs. I am always adding to this list. I encourage all parents to start clicking on those blogs, find the ones that resonate and speak to you and follow them. Start commenting on them, reach out to others who share your child’s neurology, develop relationships. Listen and learn. You will learn more from doing this than anything I learned in the half-dozen years I spent listening and reading non autistic people’s opinions.
And finally this is a short list of what I consider essential reading/viewing for anyone who has an Autistic child.
Wretches and Jabberers
Ido in Autismland
Intense World Theory of Autism
Emma and Teddy
Emma, Barb Rentenbach and Lois Prislovsky
Emma, Mark Utter and Ibby at the ICI Conference – July, 2013
Emma and Laura
Emma and Ibby
Larry Bissonette takes Emma’s photograph
Emma and Henry
Emma's Hope Book 