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What I Wish I’d Been Made Aware of When My Daughter Was
Diagnosed With Autism
Ariane Z urcher
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 lif e and the lif e of my daughter, it is
these people. My gratitude to all of them doesn’t come close to covering how I f eel.
a) Blogs by Autistic people : T his is a partial list. To see more blogs go to the blogroll ‘here‘ as well as each
of these blogs of ten f eature 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, T he T hird Glance, Tiny Grace Notes, Yes, T hat 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 f ew of my f avorites): 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 f or us by Jim Sinclair. T his may take some time f or 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, f iction, non-f iction, 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 f avorite, coined by a f riend) 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. (T his post helps explain what presuming competence means.) If a therapy and/or
prof essional does not approach your child with a presumption of competence, please consider f inding one
who does. Tremendous long-term damage can come f rom not presuming competence. Rethink how you view
communication. Listen to your child, not just to words, but to body language, f acial 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 f inger, f irst with support if needed and as time goes on, f ade the support. Give her the
appropriate tools and support so that she can learn to type or communicate by pointing to a letter board.
T here are many wonderf ul 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 f irst, 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 f or more on this). T his is something we did without thinking f or 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. T hrow out everything you think you know and question everything. T here is a massive amount of
misinf ormation/myths disguised as truth and f act regarding autism. You may hear people say things like “T hey
are in their own little world,” or “they are imprisoned behind their autism.” T hese phrases are perhaps an
accurate ref lection of what non-Autistic people feel about the Autistic person in their lif e, 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 f or warf are. If you read or hear something that
causes you to f eel f ear, walk away, it is most likely inaccurate and intended to make you af raid. None of us are
able to help our children when we are terrif ied. 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 f eel 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 ______ (f ill 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 ref rain f rom doing it as
it gets me into “compare and despair” thinking f aster than anything else. Emma is Emma. She is best served
when I remember this f act.
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 f orward 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 f orgive
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 of ten our best teachers and many of them are leading the way so
that our children’s lives might be better than their own. T hese 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 of ten will not and does not accommodate her or give her what she needs
to f lourish. T hey 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.