This is a post for parents (autistic and non-autistic alike):
- Parents who get told by doctors that their child is autistic in the most devastating way possible.
- Parents who are told that their child may never learn, may never talk, may never “develop like a normal child” or that their child “may have severe difficulties.”
- Parents who worry that they are at fault, somehow, in some way. (Parents are not at fault – it is a different neurotype. Autism does not “develop” – you are autistic from birth. You are autistic as a child, and you are autistic as an adult.)
Things to remember:
Doctors can’t predict the future.
You can be autistic and happy. It’s possible. Just because you hear that your 2 or 3-year-old is autistic, doesn’t mean that they can’t live a happy life. Also, remember that your child was still autistic before the diagnosis. They are the same child you have been caring for the last X number of years.
Autism is about 80-90% genetic. This means that you very likely may have an autistic relative – sibling, parent, grandparent – or you may even be autistic yourself. There are of course cases of de novo mutations which were not from either parent as well, but anecdotally, I find this to be less common. Many parents simply don’t know what autism is, and when they look into it for their child, start realizing their brain works in a similar way, or see it in their significant other, especially after finding out how autistic girls and women often present.
Don’t project your worries and fears onto your toddler. If you need to process what having an autistic child means (and what it means for you and your particular autistic child), seek therapy or counseling for yourself sooner than later. Your child doesn’t deserve to have neurotypical expectations and milestones put upon them. You cannot turn your child into a non-autistic child. You cannot “see past their autism.” They are right there. They are not “hiding” – they just may be overstimulated, or have trouble talking, or various other things that aren’t recognized in society as “typical” behavior. But they are not “hiding behind their autism.” That rhetoric (most often promoted by autism charities run by non-autistic people) is very harmful to autistic people. It presumes that our autistic brain is not real, or that we do not have feelings if we do not express them in the “typical” way. I hated hugs as a kid and was expected to hug extended relatives. Some of them try to kiss your cheek (awful sensory experience) or wear strong perform or talk loudly in your ear when you hug them. As I was undiagnosed, I gritted my teeth through those experiences with high anxiety. But I looked (from an NT perspective) “fine” so no one worried. If you don’t play the game of NT communication, if you don’t mask, you lose out on being able to control your environment and communicate to others (and have them listen to you). It is so important to listen to what your child is saying (or showing) and to believe them. I was told many times to stop complaining about loud noises. For my entire life. By my entire family. It was painful. But to them I looked “fine.” I learned to hide my distress because no one seemed to care about it anyway. They had no idea I was in pain.
They assumed my brain worked the same way theirs did. It didn’t.
Almost all autistic “behaviors” have a reason. It may not seem like a good reason to you, or an appropriate reason, but there is almost always a reason. Many “behaviors” are because of sensory differences and literal thinking or miscommunication from other people to us. It is highly unlikely we are trying to manipulate anyone. We may be in sensory pain. We may be overwhelmed.
I felt so sad for an autistic child in a horrible documentary when he was forced by his mom to move to another place over the summer, even after displaying good behavior at his home and school. He started getting upset, and talking in a stressed out voice, and moving his hands. He was not hurting anyone. His mom felt “unsafe” and called the police so he would “behave.” He was completely still, and “looked fine” when the police got there. He “behaved.” That was not a “dangerous” child. That was an anxious, rightfully upset, stimming autistic child. He did not deserve to have no control over his life, and to be ambushed by both her and a therapist about moving without any warning. They could have approached him in ways which did not cause this. They could have validated his feelings. Instead they refused to see him as an autistic person, and had been more worried about his “autism acting up” than anything else. This is what happens when people talk about seeing “past the autism.” They also see past the child.
The worries you have are not worries for your toddler. Your toddler doesn’t worry about whether they are going to have a relationship, or go to college, or drive. Take it one step at a time. Don’t assume that because someone tells you something about the future of who your child will become (doctor or not), it is going to come true.
Don’t worry about being judged. You will be anyways, no matter what. Don’t prevent your kid from stimming in public (when it may be the most important time for them to regulate their emotions), or from wearing headphones/earplugs/sunglasses/hats, just because you personally cannot deal with the embarrassment of other parents judging you and your child. People are constantly going to tell you how to parent your child (although I’m sure they already do!) and you may have to educate others, or try to ignore them. I’m not saying it’s easy, it’s not. But letting your kid do what they need to do to emotionally regulate should be the number 1 priority, or finding ways for them to channel their stims into something more helpful.
Possible Causes of Sensory Pain and Distress:
- chaotic visual floor patterns
- loud noises, high-pitched buzzing most people don’t hear.
- smells, or texture issues (I’m not a fan of cardboard or paper towels – get unpleasant shivers), can also extend to texture issues with food
- touch sensitivity – light touches, especially unexpected, may be startling or painful. Some people may like compression vests for deep pressure, or may have large personal space bubble and not like feeling restrained (loose clothing is better for some).
- Misunderstandings from other people, or being expected to talk, which is very difficult for us.
- Why talking may be hard for your child, especially for children with selective mutism.
Resources for More Info:
These are books and lectures:
For understanding ASD:
- Nerdy, Shy, and Socially Inappropriate by Cynthia Kim
- Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age by Sarah Hendrickx
- Neurologically Mixed Relationships at Love and Autism (very good, autistic woman who talks about miscommunication between autistic people and non-autistic people. About an hour but it’s worth it.)
- Tony Atwood About Masking and Mental Health
- Best Video, best summarized – autism in women, Tony Atwood lecture (only 35 min.)
- best research video – the woman profile of autism
- Autism: How to Raise a Happy Autistic Child by Jessie Hewitson
- Link to book review:
For social skills/understanding Neurotypicals:
- Making Friends Strategies to improve social understanding and friendship skills (good for parents and younger autistic people)
- Living Well On the Spectrum (very good for emotional regulation and some social cues – has worksheets in the back) by Dr. Valerie Gaus
- A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior by Ian Ford
- ^One caveat to the above book – ignore the “sex” chapter – it has very bad advice. All other chapters are good though. More for autistic adults but some of the metaphors at the beginning of the book are very helpful, likely even to younger autistic people.
These are autistic people explaining their experiences and some basic terms as well, such as how to understand meltdowns, sensory processing issues, or eye contact/body language in autistic people:
- Amethyst Schaber’s amazing youtube channel:
- Neurodivergent Rebel’s amazing youtube channel:
- Agony Autie’s amazing youtube channel:
- Remrov’s amazing youtube channel: