Presumably, if you are reading this it is because your child has recently been diagnosed with autism. Firstly, before you read any further, I want you to take a deep breath and relax for a minute. Take a few minutes to listen to what I have to say. There are probably a number of emotions you’re feeling right now. You might be overwhelmed at the amount of information you’re trying to take in. Perhaps you didn’t know a whole lot about autism before you received this news, and you’re now trying desperately to do research on the topic. Perhaps you’ve been bombarded with recommendations therapies, resources, family supports, and all sorts of other stuff and you have no idea where to start.
For the moment, I’d like you to take a deep breath and calm down. Autism is not the end of the world. Autism is not a death sentence or some sort of terminal illness. Despite what you may be inclined to think (or have heard been said before) autism really isn’t a tragedy. Your child has a disability, and because of this fact they will face different and perhaps greater challenges than most other people, as the world is not set up to accommodate your child’s unique needs. However, this is not necessarily a bad thing or something to run from or be ashamed of. Your child is not broken, your child is whole. Your child is not missing, your child is present. Autism is not a “shell” under which a non-autistic person exists struggling. Your child is wholly autistic. Autism is a part of neurology, the way their brain is physically wired. As an autistic person, your child feels, senses, communicates, thinks, and moves in different ways than most other people. However, different does not mean less, broken, or wrong.
Remember that the child you had before has not been replaced. That little piece of paper that says “ASD” on it did not change the child you had before, nor take him/her away. The same child you love is still there. Any accomplishments or milestones your child had before this point are still valid, and there’s no need to spin them in a negative light because you know now that they’re autistic.
A lot of what’s written down on the paperwork may seem bleak. Perhaps the diagnostic team has given you some tragic narrative about what your child will never be able to do. Don’t listen to any of it. Seriously. Nobody has a crystal ball. Nobody can look into the future and tell you what your child will or will not be able to do. Like any other people, autistic people grow and develop. Nobody outgrows or is “cured” of autism, but your child will learn and develop life skills and coping mechanisms to help them survive in a neurotypical world, and many autistic people can thrive if given the correct supports. Autism exists on an incredibly broad, three-dimensional spectrum, and so there really is no telling for sure what the future for your child is. They may grow up, live independently, and become highly successful and win a Nobel Prize. Or, they may grow up and need continuous care and support. Honestly, either of these could be considered equally likely. What is for sure, though, is that autism really is not a death sentence or the end of the world. Your child is fully capable of growing up as a happy autistic person if they are given the right supports. What you can do about this is love and accept your autistic child for who they are.
Acceptance does not mean “doing nothing.” Acceptance does not mean you’re “giving up” or have stopped looking for ways to help your child. Autism acceptance means recognizing that autism is not an inherently bad thing, and that it is an integral part of your child, just as you have parts of your identity that are integral parts of you. It means recognizing that your child doesn’t need to change who they are to be loved and accepted.
Many parents have taken a “warfare” mindset with autism, that they are “fighting” autism. I will tell you right now that you can choose to fight autism, but this is a fight you will lose. Not only will you lose, but your child’s ultimate well being will be taken as a casualty. If you accept your child as an autistic person, however, everyone will be much happier. Does it really matter that much if your child flaps their hands? Being the same is boring anyway.
You’ve probably received an overwhelming number of recommendations for all sorts of therapies and medications. Know that just because the doctor recommends it doesn’t mean it should be done, or that it is the best for your child. A lot of these “treatments” will likely do a whole lot more harm than good unfortunately. Do your research, and as part of this you should definitely consult with autistic adults who may have a better perspective on these topics. There’s a wonderful Facebook group (which I’m a part of) titled Autism Inclusivity, in which the parents of autistic children can consult with autistic adults regarding autism. I highly recommend you join, because actually autistic people are going to be your best resource for raising an autistic child. (And the number of posts in that group from the parents of newly diagnosed autistic children is what inspired me to write this). You’ll also have to watch out for a lot of the pseudoscientific autism “treatments” that are out there, many of which can do serious harm to your child. Stay vigilant!
You know your child best, and you have to be an advocate for them. Hopefully someday your child will learn how to advocate for themselves, but for the immediate road ahead of you that’ll be your job.
After hearing the news of the autism diagnosis, you might be feeling emotions such as confusion, sadness, or perhaps even anger. Really, I can’t blame you for feeling this way, as this is the expected reaction from the (often false) expectations society has set up about autism. My mother admits that she cried when she learned I was autistic. However, these feelings are completely unnecessary. Autism is not the end of the world, really. It is not a tragedy. It is not a death sentence. There will be struggles, yes, but this is true of anybody whether or not they have autism! Autism is the beginning of a new journey, and one that doesn’t need to be riddled with such pessimism.
And thank you for reading so far. It means so much that you have listened to my words as an autistic person myself.
Quincy, and a perhaps a large portion of the autistic community as well.