Ariane Zurcher
emmashopebook.com
We want April — Autism Acceptance Month — to matter, to help
further acceptance and understanding of autistic experiences, happiness,
and rights for autistic people of all ages and abilities. We will be
publishing your Autism Acceptance posts and pictures all month long. If
you want to participate, contact us at thinkingautism at gmail dot com.
-TPGA Editors
What follows are some of the things I wish I’d been told (and
given) when we learned Emma was Autistic. These are the things, in
retrospect, I wish all those doctors, specialists, pediatricians,
therapists, and people who dedicate their lives and careers to autism had
told me, but did not. I believe our lives would have changed
dramatically had we been told even a few of these things. It is my hope
that for those of you who may be at the beginning of your journey with
an Autistic child, this list might help you avoid some of the many, many
mistakes we made and a great deal of unnecessary pain.
1. Seek out the work of Autistic people. Most of the work I’ve
listed was not available when my daughter was diagnosed, but it is now.
Take advantage of all that is out there, these people are leading the
way. If I had to choose just one thing that has had the single greatest
impact on my life and the life of my daughter, it is these people. My
gratitude to all of them doesn’t come close to covering how I feel.
a) Blogs by Autistic people: This is a partial list. To see more blogs go to the blogroll ‘here‘ as well as each of these blogs often feature blogrolls as well: A Quiet Week, Autism Experts, Autistic Hoya, Chavisory, Cracked Mirror in Shalott, Emma’s Messiah Miracle of Music, Evil Autie, Gareeth, I’m Somewhere Else, It’s Bridget’s Word, Just Stimming, Kyriolexy, Musings of an Aspie, Olliebean, Paula Durbin-Westby’s Blog, Radical Neurodivergence Speaking, thAutcast, The Third Glance, Tiny Grace Notes, Yes, That Too
b) Watch these two documentaries: Wretches and Jabberers and Vectors of Autism
c) Read books written by Autistic people (again this is just a few of my favorites): Barb Rentenbach’s, I might be you, any book written by Judy Endow, Peyton Goddard’s, i am intelligent, Loud Hands: Autistic People, Speaking, any book written by Tito Mukhopadhyay, S.R. Salas’s, Black and White, Michael Scott Monje Jr.’s Nothing is Right and A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior
2. Autism is not a disease. Read Don’t mourn for us by
Jim Sinclair. This may take some time for you to understand. It’s
okay. Get the help and support you need so you can better help your
child. Try to think of autism in the same way you think about any
groupings, a Mac and a PC, fiction, non-fiction, memoir and young adult,
a shirt, a pair of pants, shoes and socks, a microwave and a gas heated
oven. Autistic, Neurotypical, Allistic, (or my personal favorite,
coined by a friend) NT-NOS, we are all human beings. Try not to judge
one over another. Judgment will not help you help your child.
3. Presume Competence. (This post
helps explain what presuming competence means.) If a therapy and/or
professional does not approach your child with a presumption of
competence, please consider finding one who does. Tremendous long-term
damage can come from not presuming competence. Rethink how you view
communication. Listen to your child, not just to words, but to body
language, facial expressions. You may be surprised by the ways your
child is communicating despite not being able to do so verbally. Teach
her to point with her index finger, first with support if needed and as
time goes on, fade the support. Give her the appropriate tools and
support so that she can learn to type or communicate by pointing to a
letter board. There are many wonderful iPad apps that
can help with this. Begin with sequencing games and colored tiles, or
if she’s musical, notes. Join them together to make patterns. Show her
first, have her mimic.
4. Do not speak of or about your child as though they cannot and do
not understand or hear you (read Barb Rentenbach’s book for more on
this). This is something we did without thinking for years. Sadly it is not the only regret I have, but one of many. Still it is
worth repeating. Chances are your child can and does understand what
you’re saying even if they do not show any signs that you recognize.
5. Throw out everything you think you know and question everything. There is a massive amount of misinformation/myths disguised as truth
and fact regarding autism. You may hear people say things like “They
are in their own little world,” or “they are imprisoned behind their
autism.” These phrases are perhaps an accurate reflection of what
non-Autistic people feel about the Autistic person in their
life, but they serve to divide rather than unite and ultimately serve
none of us. Be suspicious of anyone who says they know what causes
autism or how to “treat” it. Disregard any organization that describes
autism and your child as tragic, an epidemic, a burden or any other word
generally reserved for warfare. If you read or hear something that
causes you to feel fear, walk away, it is most likely inaccurate and
intended to make you afraid. None of us are able to help our children
when we are terrified. Fear can cause us to make decisions we will
later regret.
6. Set your child up to succeed. My daughter is extremely sensitive
to criticism. Saying “No!” or criticizing her does not help her learn,
but instead makes her feel badly about herself. Encourage her with
smiles and by asking her to try again.
7. Do not try to make your Autistic child behave like a non Autistic
child, instead encourage your Autistic child to be the very best ______
(fill in your child’s name) they can be. For more, read this.
8. Avoid comparing your child to any other child, Autistic or
otherwise. I have struggled with this one and continue to. All I can
say is, this is a work in progress. I hope one day to “know” this and
refrain from doing it as it gets me into “compare and despair” thinking
faster than anything else. Emma is Emma. She is best served when I
remember this fact.
9. We parents are fallible. We will make mistakes. I’ve made
dozens. I wish I hadn’t made quite so many. But I have. If there is
one thing I know without a doubt it is this — I will make mistakes, I am
human. I can admit my mistakes, tell my daughter how sorry I am, make a
living amends to her by doing everything in my power not to repeat the
mistake and continue to move forward without beating myself or anyone
else up. As my wise mother once said, “Show and tell your children over
and over how much you love them, and one day they will forgive you.”
10. Get to know Autistic adults. One of the single biggest
misperceptions surrounding autism is that autism is only seen in
children. Autistic adults are often our best teachers and many of them
are leading the way so that our children’s lives might be better than
their own. These people are courageously and tirelessly pushing back
against the deeply ingrained prejudices, biases and misperceptions that
are rampant within our society. (See #1) It is my goal to honor these
people who have beaten a path ahead of my daughter, so that she may more
easily live in this world that so often will not and does not
accommodate her or give her what she needs to flourish. They are
speaking out, let’s all get behind them and give them the microphone so
that more can hear what they are saying. One day, the person holding
that microphone might just be your child!
The year after Emma was diagnosed ~ 2005
Previously published at
emmashopebook.com.
