Things Every Parent of a Child With Autism Wishes You Knew

You know from a previous post what every child with autism wishes you knew.  Now you can see what every parent of a child with autism wishes you knew.

 From Katie Duzan:

• Kids with autism are not bad, naughty, or wild hooligans that are a danger to society. They are not products of bad parenting or unloved children. In fact, you'd be hard pressed to find better parents than a lot of the parents of autistic kids. Most families have a single autistic child and other neurotypical kids - proving that it's not logically the 'nurture' that is missing. Our kids do not need physical punishment. Here are some studies on why physical punishment is a bad idea anyway, let alone with children who have problems with relationships and development as it is.

• Autistic does not mean Rainman. Yes, some autistic children are savants. But not every autistic child has a "gift".

• On the same note, not all autistic children are mentally retarded. Quite the contrary, most autistic kids are just average IQ. It's just hard to test when you can't tell what the child understands because they don't speak.

• Our kids may look the same, but they're not. Autism is a hidden disability - meaning that if you looked at a photo of an autistic child, you wouldn't be able to tell from their looks they had a disability. That doesn't mean it's not real. Type 1 diabetes is an invisible disability, too. Keep in mind invisible doesn't mean it's not there. You just have to look closer.

• Autism is not a cop-out. Visit a household with an autistic child during the day to witness what autism REALLY is. I promise, it will blow your mind.

• We parents are not martyrs. If you think special needs' parent's patience extends to rude and/or ignorant people, think again. We are very protective of our children, and we get defensive and angry just like everyone else. Don't be the one to push that button.

• Our kids can hear you, even if they're not looking. And odds are, they understand exactly what you're saying. They don't respond to things like other kids. Watch what you say, because autistic kids also have fantastic memories.

• Stimming may seem odd, but it's perfectly natural. You probably stim, too. Click your pen? Chew on your pencil? Play with your hair? Chew gum? Yeah, that's stimming, too. My kid likes to run in circles more than click his pen... It's a matter of preference. But everyone does it.

• We are just parents. They are just kids. We will make mistakes. So will you.

• You have no idea what really goes on in our lives. We are juggling meetings with the school district, doctor appointments, constant barrages of evaluations along with therapies and teacher meetings. We get crushed at least once every six months by evaluations that compare our child to others and note their massive failings (rather than their progress, in most cases). We go through it so much that there's not even enough time for us to heal. There is a constant gaping hole in our heart from hearing about how our children are not the same.

• We want to know about our kids just like every other parent. Please don't think that we use autism as an excuse. We can't fix a problem unless we know about it. It is more of a challenge to teach our children, but we want to teach them.

• Pride and ego left us long ago. Go to a grocery store, doctors office or meeting with an autistic child throwing a tantrum and you would totally understand. It fails to phase us parents after a few hundred trips, although the stares and uncaring looks still sting.

• Despite the challenges with our children, we love our lives. We love our kids. We don't think they need to be 'fixed' - just 'helped'. We want our children to succeed - on their own terms. We don't ever want pity, although a kind ear is appreciated more than you could ever imagine.

• We hate talking about the "could have's" or "should have's" of autism. Especially if they can't be fixed. We can't go back in time and change whether or not we got an epidural, had a c-section, had preterm labor or fed our child formula. If there's nothing we can do about it, there's no use telling us. We guilt ourselves constantly anyway, we don't need anyone else's help. There's a difference between helpful and hurtful. If you walk that fine line, remember to be kind.

• We love our kids with all our hearts. Because of (not in spite of) their differences. They have taught us more than we ever imagined we would know. To us, different is our normal.

• We know our kids love us. We don't need hugs or kisses to prove it (although some autistic kids are affectionate!). We know anyway.

• No two autistic kids are alike. Some kiss everyone they see. Some hardly stim at all. Some rock in the corner. Most are very happy. If there's a diagnosis, there's no need for second guessing. And if the parents think that their child has autism, they're probably right. Disabilities are frightening to parents, and it takes a long while to accept the possibility. If a parent voices a concern, they have already analyzed it to no end. Accept the possibility.

• Autism diagnoses are not handed out easily. It takes months to see a specialist, and usually several appointments to get the autism diagnosis. Doctors are very sure before they label a child, and won't give a diagnosis if there's any question whatsoever.