Your Child’s Been Diagnosed. Now What?

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 and Teddy

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

Emma and Laura

Emma and Laura

Emma and Ibby

Emma and Ibby

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

Emma and Henry

Emma and Henry

16 responses to “Your Child’s Been Diagnosed. Now What?

  1. SO BRILLIANT!

  2. Perfect, wish this had been in existence ten years ago, will help so many!

  3. Thank you so, so much! I reached out to Jess (diary of a Mom) last week asking for her help with finding this information for the likely diagnosis we will soon receive for our son, and she replied that she reached out to you to help me find answers. I just followed the link she gave me to your blog, and here this is! I can’t thank you enough. Now, to read all the resources you just pointed me to…

    • You are so welcome, Karen. I do not wish the fear and worry we once felt on anyone. It shouldn’t be that way. Reach out any time, there are so many more things to share…

  4. The part about presuming competence is SO KEY. Thinking of our child as always “autistic” first (and I say this as someone on the spectrum!), is disempowering and disrespectful. Thanks for the wisdom, as usual.
    Love,

  5. Marie Brennan

    Ariane, Wonderfully helpful!

  6. Having chatted with a lot of parents the day of the diagnosis or shortly after before any of the rest happens I would add parents need to remember that nothing has actually changed about their child. A diagnosis is not magical that way. They now have a tool to help them understand their child and get them what they need in the broader world but they are still the same child as they were the day before.

    This seems basic but so many people I have talked to seem to experience the diagnosis as altering everything and the fact that it is is the same child they took in for an evaluation gets lost in the rush of feelings about what it means and what they might need to do about it.

    This very basic fact gets lost in the post diagnosis crush when everything might seem so urgent but it’s helpful in that panic to know that without knowing what to call it for sure people have already been dealing with autism and everything they learned about their child and how they react and what they like is still true.

  7. So many great points in this post! Presume Competence has become my manifesto….I am thinking about putting it on t-shirts! The only experts I find credible these days are people with autism! As a SLP of 19 years, I know that I had a lot wrong. Not out of malice of course, but out of misunderstanding. Now that I am practicing RPM with 20+ clients per week, I am learning from them. Learning where “we” as experts have been wrong.

    We need to keep raising the bar, communicating and sharing what our loved ones and clients with autism are telling us, exchanging ideas and training people (family, providers, teachers) to interact and educate with respect and expectations of success! There is not a one size fits all solution but respect, open mindedness and persistence are a good start!

  8. As a parent of a non-speaking child I find I have to work almost daily to keep fear at bay. It is such a huge barrier to presuming competence. Something that Emma wrote really helps me get back on track (forgive me if I haven’t got the words quite right): ‘do not believe your fears, they will lead you the wrong way’.

  9. Just gave this link to a mom on a mommy website whose son was newly diagnosed. I hope she reads/discovers/follows you!

  10. I can’t thank you enough for letting all your readers into you and your daughters world, it has enlightened me immensely! I work with people that have autism and I thought I knew what assuming competence meant until I started reading this blog. The words written here have forever changed my views, I hope that this change within me can effect my coworkers as well as the children we work with for the better.

    • Thank you for the kind words. Since writing this post over a year ago now, I see things I would say differently… that’s how presuming competence has been for me, an evolution and it continues to change as time goes on. One gaping hole in this post of mine is this idea that some have about presuming competence, meaning we believe someone can learn and then assume they will be able to respond accordingly, the first time we say/teach it. Emma has taught me so much about the mind/body disconnect. (And now that she’s taken over the blog she is writing about it too!) She has explained how she can know something, but will not necessarily be able to “show” that she understands and knows, particularly right away or in a way I might be able to understand.

      • Yes, the more time that passes the more I realize that my idea of what assuming competence is evolves! Especially since discovering your families experiences. I work with a boy at home who is non verbal but uses a communication app as well as typing and I can totally see what the concept of knowing something but not being able to show it means. He is the best teacher I’ve ever had, not only about patience but also to humble myself and know that even what I think I know, I don’t know lol. This blog has definitely opened up a whole new window for me to view him and others in. I hope that as he gains confidence in himself and we learn how to better support him he can share with us more about his body to mind disconnect as it affects every aspect of his life.

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s