Recently, I was told by a parent of a child on the autism spectrum that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism.
Some aspects of my personal history (Endow, 2009) that you may find interesting include:
Was nonverbal for some time
Had self-injurious behaviors
Lived in an institution for some years of my childhood
Lived in two different groups homes
Diagnosed with classic autism
I understand that as a parent of a child with significant needs you may look at me and look at your child and see no similarity. Please know that in the future of your child’s life autism will not look the same as it does today. Your child will grow and change over time just as all human beings do.
Some aspects of my life today (Endow, 2009) that you may find interesting include:
Married, had three children, divorced and raised them alone, one child with ASD diagnosis
Decided to get and obtained a master’s degree in social work in order to better support my children
Worked several years in a homeless shelter, developed and case managed a program designed to stabilize homeless shelter clients in their own apartments
Worked in the field of mental health for several years, limiting my practice to autism for the last two decades
Have authored several books, numerous blogs, been interviewed for TV shows, documentaries, have a DVD (with another in the works), maintain a website (www.judyendow.com) and speak internationally on autism related topics
Must spend time intentionally regulating sensory system in order to function in my daily life
Run my own business which enables me to combine work and flex calendar as needed for my autism neurology in order to allow me to do my work and earn enough income to support myself
Maintain a variety of work including consulting, writing, painting (see and purchase art prints and greeting cards at my website) and speaking by scheduling my work so as to avoid movement disturbances in my body (had a few episodes of catatonia in the past)
Do not speak on the phone for business. Only speak on the phone with a handful of people and after much practice that usually involves Skyping as a stepping-stone to phone only without the ability to see the conversation partner
Use a high degree of visual support (which I make myself) and routines (helps in reserving energy for novel situations) in my daily life
Am happy, have friends, am relatively healthy (a bit overweight), have a satisfying career and am just as autistic as I have always been
The practical response to the comment that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism is it is too late – much too late! I already have written several books that have sold around the world, have written numerous blogs and articles, have a DVD and am developing more content for my website that will include a video blogging feature. Also, I will not stop speaking on autism topics in my own country or in other countries. I will not be canceling already booked engagements and I will continue to book future speaking engagements. Even if I did stop, as I was encouraged, I cannot undo what is already out there in permanent form as books and such.
The logical response to the comment that I am “not significantly enough affected by autism to be able to understand real autism” and therefore should stop speaking out about autism is that these words do not make sense. Autism is a spectrum. There is no experience of autism that is more real than another experience of autism. All autism is real.
Furthermore, the idea that if a person can speak about their autism they are not autistic enough to weigh in on the subject is faulty logic. This sort of reasoning would mean that any autistic able to share about their autism really is not autistic in the first place – that autism means no ability to communicate. Not only is this untrue – it is a silencing attempt someone is trying to pass off by dressing it in a cloak of pseudo logic.
My friend Toshi Kinoshita summed this up nicely when he said, “That’s like saying Karl doesn’t like bacon enough to really love it and therefore should stop eating it. People can say the stupidest things.” (Personal Communication, 2015).
Just like Karl will not stop eating bacon, I will not be silenced. My experience of autism is not the same as anyone else’s experience of autism. It is my experience of autism. It is a valid experience of autism. When I speak and write about it many people tell me my words are helpful. Thus, I choose to continue writing, speaking, consulting and painting about autism – being who I am and doing what I do in this world.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
JUDY ENDOW, MSW