This piece is for people new to the autism fold. I bet you are in a daze. I bet you are scouring the Internet looking for advice and answers. I bet you are at least a little afraid of the future.
I remember how I felt. I cried at the diagnosis. I begged the doctors for reassurance that my daughter would be okay, that she would not be ruled by this monster. I got looks of pity and carefully worded bad news.
That was then. In the years since I have to thrown everything away I thought I knew about autism. I had to accept that her quirks were not a sign of genius (that was a hard lesson for me). I had to learn how the condition works in her, and how it doesn’t. I opted not to fear it, and I had another child with full knowledge (s)he would likely have autism, too. (My second child, my son, has autism, but is so opposite his sister I wonder how they came from the same gene pool).
We’ve been on this road for 10 years. I don’t know everything, but I do know the future is not as scary as you think.
You are going to grieve. Giving you “permission” is a bit ridiculous, because you are going to grieve with or without permission or support. You are saying goodbye to all your plans and presumptions about typical development, and hello to a heck of a lot of fears and confusion. You are not “selfish” or “dramatic” for being rocked by this. It’s huge. I know. I’ve been there, and I came out the other side.
Your “baby” did not change with the diagnosis. (S)he had autism before. You, or people around you, might be seeing the child through the murky glass of a disability label, but the child did not change. Their sunshine did not dim. They are just as cute and wonderful and sweet as before, and still full of promise.
You did not fail your child. You could micro-analyze everything your child was exposed to or ingested, but it is useless. Are you fretting over vaccines? Wheat and/or dairy? GMO? Chemicals and additives? Extra-terrestrial gene manipulation? Frankly, I’m past the point of asking “why” or “how”. Whatever the cause – and alien gene-manipulation is more plausible than some theories I’ve read – it’s done. My kids have autism. If anyone really knows what factors are putting the condition on the rise, they ain’t telling.
You know your child loves you unconditionally, just like every other kid. Maybe they not as openly affectionate but it is there, and they want that love returned. Like any kid, tell them you love them a dozen times a day. Touch them, as often and as firmly as they can handle. They need that connection. The world is scary. It is loud, bright, unpredictable, and just too much for your child to want to explore. They put all their love and trust into you. With you as their anchor and their lead, they will be curious. They will branch out. They will try new things.
Your child is less different than you think. It isn’t the preferences or the sensitivity that acts as the markers for autism, it’s the intensity. People might not get the similarities between a massage and a child with autism squeezing between the couch and the wall. Both calm through the use of deep pressure. People who pace when nervous, or tap their fingers, or chew gum are exhibiting mild stimming behaviors. We all dislike the sound of sirens even when we know we are safe, and most of us won’t eat weird food. We all explode when overwhelmed. These sensitivities are stronger in people with autism, but they are not unique to them.
Your child is really less different than you think. We blamed every one of our daughter’s behavior challenges on the autism, until we met Maria. Maria worked as a Behavior Interventionist, and she had something we didn’t. Between her personal and professional lives, she had piles upon piles of experience with NT (neuro-typical) children and children with special needs. Plus, she was one of those amazing moms you wish you could be. Maria shrugged at several of our worries, and said, “Nah, she’s just being a kid.” She often handled issues as neuro-typical challenges with some autism on top. And she was right. All kids have challenges to be conquered, and these challenges are viewed as normal growth. They are not mini-humans; they are children. Thank you, Maria, for showing me this. You are my hero.
There is a stupid amount of information out there. “Autism” is a media buzzword. There are links and stories and causes and even proposed cures. Some of the information is presented for free as a favor for struggling parents. Some is clearly for sale. But you don’t know the authors, the doctors, or the parents. You don’t know if the reviews are real, if the statistics are skewed. And on the flip side, they don’t know you, and they certainly don’t know your child. Do join support groups and online forums. Others have been on this journey for years, and they have tried or heard of nearly all of what you are just discovering.
You are going to get a lot of random advice. Some of it will be inapplicable. Some of it will be outdated. Some of it will be wrong (the vaccine link has been scientifically disproved – its falsified studies revealed, its medical supporters shamed, and its author sued – but it still has its advocates). Take this the same way as you did when your child was a newborn. You were likely plied with odd and random advice from all sides, and wasn’t that fun? But sometimes people want to know. They are interested. They want to connect with you, and to do this they show you their autism cred. Or they are know-it-alls and need to one-up you because they are a$$es. Both types of people are are kinda paying you a compliment.
Your child is still a kid. They are still a small package of mystery and potential covered in Popsicle juice. They will mature. They will grow. They will learn. They will surprise you, with how they think, and what they can do. You will roll your eyes and bite your tongue. You will laugh. You will brag and puff with pride. Autism is a condition, a set of challenges, but not the sum total of the person.
Be strong, be flexible, and be prepared to change your direction. Fire the consultant if you don’t like them. Try a new therapy if it sounds promising. Switch doctors if you don’t feel respected or heard. Go head-to-head with the teacher or principal if you feel they are wrong. True story: a couple of years ago I broke my biggest rule and put my 12-year-old daughter on meds. She had stopped functioning. She was no longer in class due to behaviors. Her rigidity had become everything. Her world had narrowed to the safety of her imagination. She had outbursts in the hallways, apparently triggered by her imaginary friends, and the school staff feared psychosis. But in spite of all this, I cried at the pharmacy. I thought I was a terrible mother for doping up my kid. I was wrong. She is not doped. She’s alert, she’s articulate, and she’s more in control of her emotions. She is no longer crippled by rigidity, and is exploring several new interests. She’s just happier. I am a good mother for letting go of my prejudice and trying something new, something I feared, something that has helped her immensely.
Life makes no guarantees – good or bad. People with autism accomplish huge goals. Let your child amaze you.