Thursday, July 23, 2015

Reclaiming the Dignity Lost In A Diagnosis

by Cas Faulds

As an autistic person, I have multiple facets to my identity – just like everyone does.   One of those facets is that I am also a parent.   My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is.  I know what it is like to receive a diagnostic report that includes horribly negative words about deficits, and I know what it is like to have to explain that to other people in your child’s life including teachers and family members.

So, based on that, I would like to offer some advice to parents who have gone through this process that I wish someone had given me when I was there.

Take the diagnostic report, full of the language of the pathology paradigm, and reword it to reflect the neurodiversity paradigm.


The best way that I can explain this is to give you an example:

From a report:

X appears to have impairments in communication and social interactions.  In addition, he was reported to have several restricted and repetitive behaviors.  Specifically, he was noted to have difficulties engaging in a social conversation, high pitched vocal tone, impairments in use of eye contact, difficulties socializing and interacting with other children, and limited emotional reciprocity.  He also collects rocks, has an inflexible adherence to routines, displays heightened sensitivities to light and loud noises, and finds it hard to cope with changes to his daily routine.

No, that doesn’t say anything positive at all!

So, how can I reword this to say something positive?

X has differences in his communication style and social interactions.  He prefers to engage in behaviors that are comfortable for him.  Specifically, these include conversations that remain on topic and relevant to him.  He prefers not to make eye contact because it is uncomfortable for him, and he prefers interacting with children who are older or younger than him, rather than only interacting with his age mates who can be less predictable.  He loves collecting rocks because he is interested in the different shapes and substances that rocks are composed of.  X prefers predictability in his daily routine, and enjoys being in sensory friendly environments.


Why should you do this?  Why go to the effort of rewriting a professional report?  Because you are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once.  When you do, you want to do that from a place of strength rather than a place of weakness.  You want to highlight your child’s unique potential rather than place limitations on them, and you don’t want to have to confront all those negative words every time you do this.  This way, you have the words you need to ensure that your child receives the support that he/she needs without trading in his/her dignity.

As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me.  Their efforts to make me into their version of me were unsuccessful but it did result in me feeling as though there were things wrong with me.  For my son, I want him to be able to be him, without having other people give him the message that there is something wrong with him.  This way of introducing him to people who will work with him sets the tone from the beginning that you value I value my son for exactly who he is and I will not allow them to try to change him.