Top 10 things I have learnt as an autism parent

A few lessons that I have learned in my two years of being an autism parent…

1. Every autistic child’s path is different

There is this tendency, just as with neurotypical children, to assume that every child will follow a particular pattern of development. I thought the same, and would end up comparing how my two children developed until it hit me – with autism, there is no developmental manual! Every child develops at his or her own pace.

2. There are therapists, and there are therapists

I could go on and on about this one. There are therapists who know how to do their job, i.e. how to handle different developmental disabilities in children, and how not to use a one size fits all approach. And then… there are those who follow the copy-paste approach! I now understand why many parents sometimes opt to learn about autism on their own, and handle the therapy themselves.

3. A therapy that works for one child may not work for another

There are lots of different therapies and interventions to choose from, as I have discovered in my two years in the autism world. As a parent, it is easy to get carried away in the search for a solution for your child. Therapies, however, should be tailored towards the specific child’s needs. If your therapist is clueless on how to do that, better find another one.

4. Always be grateful to everyone who accepts your child

The stares, the snide remarks, the pointing fingers, the whispers – I have seen them all. Every time I feel like I have finally developed a thick skin, though, there is that one person who makes that one comment about my child, and I crumble. At such moments I appreciate everyone who accepts my child for who he is, does not get startled when he shouts, laughs when they see him having fun, takes note of his sentences, and lets him be himself. (In case you are one of these people, thank you!)

5. Some autism parents will discourage you completely

My child does this, so you should do it too. This worked for my child, so you need to do it as well. Why aren’t you doing anything to help your child? Do you know that time is running out? In the last six months or so, I have heard these words over and over, and they have shaken me to the core, almost to the point of depression. Once again, I have learnt to develop a thick skin and to choose my friends wisely.

6. A support system is very important

That friend who offers to have you and your autistic kid over to their house. That grandparent who offers to babysit. That sibling who sends you loads of stuff for your child. That friend who keeps calling to check on you. That usher who reserves your seat in church every Sunday. That’s what I define as a support system. Without it, no autism parent can survive.

7. Self-care is a necessary but foreign word

Oh yes – there is something called self-care. What’s that again? In between school, work, doing home activities, keeping an eye on my child, errands, etc… self-care has no place. Judging from the fatigue I feel after every three days, however, I think it’s time I thought about it seriously!

8. Autism does not disappear overnight

Is he better? Is he cured yet? He will be fine, don’t worry. Friends, autism does not go away. The child learns to live with it and learns to adapt to the environment. There is no cure, so please stop asking us if our kids are better now. Instead, learn to love them as they are. When you do, we parents are encouraged to continue to do what we are doing to help them manage their challenges and become independent.

9. Suggestions will come at you left, right and center

Sometimes I wish I could dive into a hole where there was nobody handing out suggestions at every turn. Don’t get me wrong – I appreciate every bit of help that comes my way, and everyone who offers it – just that at times I get completely confused and overwhelmed. Suggestions and words of advice are great, just give me time to process each one and to decide if it works for us or not.

10. Take one day at a time

Just like Rome was not built in a day, autism cannot be conquered in a day. I take each day as it comes, with its joys, challenges, and victories. I do my best to enjoy my child, rather than change him. I let him enjoy his life and discover many things on his own. The day ends, and we start another day. Some days are better than others. On the bad days, we learn something. On the good days, we laugh. Such is the life of a parent with an autistic child.