Seven Things I Wish Someone had Told Me When My Child Was First Diagnosed with Autism...
1. You’re not alone.
No, really, really not alone. About one in 88 of us are on the autism
spectrum. Throughout the world, autism affects all races, social
classes, religions, and income levels. You are going to meet some
amazing people who are walking this road right with you. You may even
find that you or your spouse are on the spectrum, but that’s a whole
2. You’re worrying about the wrong stuff.
The behaviors that embarrass you in public probably aren’t the ones
you need to really be concerned about. The quirky and repetitive
behavior, lack of eye contact, communication challenges, lining up the
toys, social immaturity, the fixation on favorite topics or objects –
those may be the things that others notice, but my daughter’s sensory
challenges (that means she didn’t feel pain – or didn’t seem to — in
situations where others would have been screaming) and her lack of
understanding of danger were the things that were real dangers. The fact
that my child spins and repeats herself may freak some people out, but
it’s not in the same category as running away or hurting herself or
someone else. 3. Nobody else is an expert on YOUR child.
Dr. DeOrnellas, my co-author one of the most helpful people on our
family’s road to some understanding of autism, will tell you herself:
she may know more than you do (heck, more than just about anybody does)
about autism, but you know more about your child than she or any other
professional ever will. Trust yourself, and arm yourself with all of the
wisdom and support you can. When you find a professional or a friend
who is really helpful, you will never take them for granted. When you
are interacting with a school, a counselor, or anyone else, it’s good to
start expecting that they really want to help and that they will deal
with you in good faith. (You can always get mad at them later if you
really have to, and hopefully you never will.)
4. Do not take garbage from anybody.
You may find some people who are overly anxious to judge your family,
or your mother-in-law may think that autism is a figment of your
imagination. This is their problem; don’t let them make it yours. I
don’t care if you have the most helpful relatives in the world; if the
cost of their help is that they drive you crazy, their help ain’t
helpful. The same logic also applies to the intrusive stranger in the
grocery store who thinks that she is being helpful.
5. You will find angels in the most unexpected places.
We found that we had only the nicest people left in our lives because,
well, a lot of the rest just fled. And maybe the stranger in the grocery
store will surprise you with her kindness too.
6. You are parenting a child, not a diagnosis.
It may feel that way right now, but you won’t always feel that way. The
first couple of years after a diagnosis can take you from shock to
mobilization to the realization that your life has become one long car
drive from one therapy to another. Over time, you really will figure out
what works for your child and your family. And if it doesn’t lend to
the peace of your family and the well-being of your child, it doesn’t
matter who says that a particular therapy is The Answer to Autism. I
applaud parents who are fearless about trying things that might help
their child. When something works, there are a lot of us cheering for
you, whether that particular approach helped our child or not.
7. If you’ve seen one child with autism, you’ve seen one child with autism.
Nobody can tell you what your child will be capable of tomorrow or next
year. Keep a journal and listen to kind people who haven’t seen your
kid in a while so that you don’t lose perspective on how far he’s come.
And, for that matter, how far you’ve come. You will be impressed.
And One More Thing: Finally, please, please, take care of yourself. Do
not underestimate the basics like sleep, a good support system, sleep,
and a good cry. And more sleep. Children can make you tired anyway.
Autism can definitely make you tired. You and your child are living with
a challenge that will test you to the end of your patience. There have
been studies that have likened the stress of special needs parents to
that of front-line soldiers in combat. As Leah Kelley recently wrote, we
live with a level of stress that most people experience only
Our children are watching us, even if they can’t tell us with words, and they need us. ~ By Bobbi Sheahan with Kathy DeOrnellas