Imagine

Imagine hearing your child was in a car accident. Imagine the car flipped and forever after your child would be significantly impaired and the trajectory of their and that of so many lives attached to theirs altered forever. Now imagine everyone who hears your child was in a car accident associates their experience with someone involved in a fender bender. Yes, someone in a fender bender and another person in a catastrophically overturned car are both technically victims of a car accident. The ramifications on their lives, however, are vastly different and it is in that reality the labeling of what occurred should be specific.

Autism is that car accident – please, bear with me before getting triggered by the analogy. The spectrum on which individuals with autism find themselves (and the family who loves and cares for them) is unconscionably vast with those labeled high functioning/low support/independent and those labeled profoundly autistic/low functioning/ significantly impaired are now seen to the general public as being simply autistic. It is fully understandable for “high functioning” people to resent being seen as disabled and to want to celebrate their neurodiversity. We, as a society, can and should realize the beauty and potential of individuals who experience the world in a different way. Those unique perspectives make our communal experience richer in ways we benefit from now and will continue to in the future.

Having acknowledged the experience of someone who has experienced a “fender bender”, I would like to consider a more catastrophic “car accident”.  The victims of such intense collisions may need an exponential amount more assistance to get through the day and should be equally seen, understood, and respected. They are living tough lives, and it should be ok to say (while loving deeply) we are upset, angry, scared, and wish things were different for them.  

The umbrella term for autism spectrum is as outsized as using the term car accident for accurately describing the vast implications having been in one might mean. It provides the most coverage of and for those who are under the middle and outer edge of fabric above. The people holding the umbrella’s handle- the children and adults who are “identified as” or are “labeled as” but MOST CERTAINLY ARE Profoundly Autistic are not seen. Look around… you most likely do not see an adult hitting themselves in the head, banging it against the wall, biting their hands, yelling out repetitively, destroying property, or reaching out to manhandle those who care for them most. They exist and they have been lost under the umbrella’s notch.

As a society we are all in a place where we want to have our experience seen, heard, and acknowledged. And, therefore, realize this letter is a pebble in the ocean but the more we (as families of those who experience propound autism) throw our pebbles out there, the faster an island will arise. On the flag of this imaginary island, I would love to see symbols of intense solidarity, loud advocacy, and radical acceptance in the face of an overwhelming tsunami. We need help and should be seen – on that note, enough with the analogies, right?!?!