What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

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.  I have compiled an extensive list of blogs and books written by Autistic people as well as a couple of documentaries that are a MUST WATCH!   on the “Resources” page on this blog.  Please go take a look.

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

Em - 2005

116 responses to “What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

  1. Pingback: So you THINK you know autism…but you have no idea! | Opposite Ends of the Spectrum

  2. Pingback: Resources | Humming the Spectrum

  3. As an educator of children with autism I appreciated your article. I couldn’t agree more with the thoughts you shared.

  4. Thank you…
    While I do not directly have someone in my life with autism, I have family members with mental differences. I am not saying illness and i am not comparing autism to mental difference. But, society needs a shift in view…we are all human, no matter how we differ…physically, mentally, intellectually, etc/enter how you vs someone else can differ…

  5. Reblogged this on Opposite Ends of the Spectrum and commented:
    As I have been doing a freelance job for a family friend on top of my normal duties, I have been pulling 18+ hr days and had little time for blogging. So I thought Id reblog some of my favorites…
    This is an older post, but is one of my go to posts when I see those familiar posts from a parent “my child was just diagnosed…I’m lost, scared, heartbroken, where do I begin?” I don’t know if any of them actually click on the link and read…but I hope that somewhere at least one has, and has opened their mind to it and to their child, and the endless possibilities.

  6. Reblogged this on Swan Mothers and commented:
    A great list by Ariane Zurcher that describes what I wish I’d known. My journey to discovering these truths is in the Swan Mothrers book.

  7. Pingback: Awareness Sucks | Emma's Hope Book

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