Everyone knows parenting is hard. The line "When you're a parent, it's always something" is so frequently quoted, I don't think it's possible to track down who the original author may have been. Parenting is a skill that is a science, an art and some unnameable arcane category all woven together. Many of us get to learn and practice it under some version of extraordinary circumstances, a situation which I sometimes like to think of as "parenting with a twist".
A part of this twist for our family is called Autism. Everyone knows about it, most people have misconceptions thanks to stereotyping and some really well-funded fear mongering based fundraising campaigns. As many parents do, I consider it a part of my job to continually learn more about ways to support my kids. When you have an atypical kid, there is a lot more to learn. Because of being a passionate (some might say obsessive) knowledge/information seeker, I have collected a lot of information over the last several years. A frustration with the lack of resource accessibility leads me to be excited to share useful stuff with parents who have relatively newly diagnosed kiddos. Over the last few years, I've met quite a few, and some friends with quirky kids I have loved for years have also been told their kids are "on the spectrum".
Sometimes at the height of "I have been there, I can help", it's not always easy to choose the most valuable information to share, since the human brain (and especially an overwhelmed one) can only absorb so much. Hence I find the need to try to come up with a short list of most important things to know when your child receives an autism diagnosis. These are things I would tell myself if I could go back in time, and things I will tell every new person looking for insight.
1. Knowing is important
You may have been told a "label" can be a bad thing, an inescapable burden. This used to be true when kids with disabilities were treated like the broken ones and their abilities were consistently underestimated, before (however imperfect) legal protections were created to ensure access to education and employment opportunities. This struggle is far from over, but the current situation is that a diagnosis will not only help you understand your child and meet their needs, but also obtain services, accommodations and supports. It does not change your child, chances are you have noticed their differences. This is a word for their unique neurology.
2. Normal is overrated
A lot of parents' goals for their kids are based on a vision of their kid's future life looking as normal as possible. Normal is familiar, and we have been cultured to value it disproportionately. But this can lead to many unintended consequences such as years of time and energy spent on helping them master skills that may be better off accommodating the lack of while they develop their strengths. Eye contact is a great example of this. An autistic person can learn to make and maintain eye contact similarly to a neurotypical one, but this will be at the expense of effective communication. With most, there is a much better chance they will process what you are saying if they are looking away. The accomodation in this case is neurotypical person accepting this difference in communication style.
3. Question your expectations
This ties right onto the previous point about normal being overrated. In this context, normal is neurotypical, as in people with typical neurology. There are behaviors that are expected from kids at home and in educational settings that are fine from neurotypical kids that are just not worth working toward or could even cause harm being pushed onto autistic or otherwise neurodivergent kids. Eye contact example also applies here. As does the "quiet hands" rule many schools have. Many autistic kids have a need to move and fidget with their hands to aid their sensory processing and focus. Not allowing them to meet this need can cause sensory dysregulation and decreased coping skills.
4. Communication needs
There is so much to learn about! Want to focus on one thing at a time? I suggest communication needs. Though the specifics are almost as varied as the spectrum itself, nearly (if not) every autistic person has communication needs their caregivers and support people need to learn about. Another sweeping statement I can safely make is that autistics process visual information much faster than auditory. This is not unique to them, but is especially important. If your child does not speak or has a severe speech delay, look at different visual communication systems and aids even if they are simultaneously working on producing speech. Sign language, PECS (picture exchange communication system), and many different technology based systems are what I know about, but I am sure that is not an exhaustive list. You may have been told by a teacher or professional that your child does not communicate. This is just not true. Look beyond speech. Communication is so much more than words. This also applies with highly verbal autistic kids with large vocabularies. Most of them will benefit from auditory verbal information being reinforced with visuals, and will always have an easier time processing visual information, especially in a dysregulated state, when their speech skills may not be accessible to them.
5. Always seek out and consider opinions and experiences of autistic people
Whenever possible, ask your child's input for decisions related to their wellbeing. This seems like a no brainer, but most of us don't do it as well as we'd like to. There are many ways to do this besides asking them: how can I help? It can be as simple as asking them how they like working with a professional or teacher or if they do not speak, watch for their reaction to them. Like most of us caregivers, you have probably wished you could have a magic ball so you can see how your decisions would play out long term, and what your child will really appreciate as helpful looking back when they reach adulthood. We can't do that, but we can do the next best thing and ask autistic adults. We now know that autism is not a childhood condition, though it can look different in adulthood, but even if someone can pass as neurotypical with learned behaviors, they are still autistic and they have a crucial thing in common with our kids. And guess what? They are more than happy to help. I know because I asked.
6. Behavior modification
"Behavior" is quite a buzz word in special education and special needs services. You are likely finding yourself confused and overwhelmed trying to figure out which of your kid's behaviors are a kid thing and which are an autism thing. The good news is that you don't really have to figure this out. If it is a typical kid behavior, your child is still autistic and that is always relevant. If it is a behavior caused by their neurology, it doesn't mean it needs to be changed or eliminated. With every individual behavior modification goal, we first need to consider why we want to change it. If the behavior is the child coping with something and the only negative result is standing out in a group of other children, then it would be worth examining that goal. If it is a behavior that is in some way harmful, figure out the underlying cause. All behavior is communication. They are likely communicating a need. Trying to change behavior without knowing the function it is fulfilling for the child will likely be less effective and may create more problems than it solves.
7. Deal with your feelings
It's complicated. We love our kids. The world is a harsh enough place for people it was made for (and made by). How are we supposed to get them ready for this hostile world when even the experts are redefining their diagnosis every few years? Why do we have to have this additional challenge when parenting is hard enough? It doesn't matter why. We have to, but we also get to. Disability comes with challenges. Ok, that is such an understatement, it's almost funny. But I invite you to join me in challenging the notion that being different, or disabled, or autistic is a tragedy. Because how we feel about it will tell our kids how to feel about it. It will be only one of many such messages, but it is one we actually have control over. So let's make it a message of pride, love and acceptance.
I will stop here in the interest of making this list reasonably short. I may expand on these individual points in the future, and talk about other things to consider. Questions and comments are very welcome. Disclaimer, I am not an accredited autism expert. My perspective is informed by years of learning while parenting and supporting my autistic child, time spent working in the special education world, and information gained from self guided education using a variety of resources.
