This post is specifically for parents who have recently discovered that their child is autistic. I know that this can be a fairly overwhelming experience for parents and the child. This overwhelm is most likely due to the ableism which is rife in our societies. So, I thought I would take a moment to address some of the questions that you might have.
Before I get to that, I want to offer a brief explanation on why I decided to write this post. I originally had a lengthy lists of blogs that I read as a separate page on this site. After overthinking it a bit, I decided that it would be better to offer a road map. I started to create one here, but that wasn’t really working for me either. There is just so much information.
In addition to that, people start reading autistic blogs for different reasons. Some may start reading autistic blogs when they themselves are questioning whether they are autistic. They may have already know that they are autistic. Others might start reading autistic blogs when they find out that their children are autistic. Still others may have a different personal or professional interest in autism.
This post is specifically intended for parents, but hopefully other people may get something out of it too. This post is not intended to be the final answer to everything. That would be an impossible task. I could probably write a lengthy post once a week and still not be done.
Instead, I’m writing about five things to consider if you are the parent of a newly identified Autistic child.
1. Your child needs to know
To get that piece of paper, your child has probably had to spend a lot of time with medical professionals. Some of the diagnostic assessments can be intimidating, intrusive and just plain confusing. You need to let your child know that they’re autistic. I’ve written about why this is important before, but I cannot emphasise this enough.
As a child, I saw many different therapists with very little information coming from my parents as to why. I concluded that there must be something wrong with me. There was nothing wrong with me other than I was different. There is nothing wrong with your child other than they are different. They will need different kinds of support to non-autistic children. They will struggle with different things, but there’s nothing wrong with them.
Your child more than likely already knows that they’re different to other children. We feel that from an early age. We experience it when we’re excluded from any number and type of social events.
For younger children, you may want to start with a book such as “It’s Okay to be Different.” If you give them the words to understand that they’re different, in a way that doesn’t equate difference with bad, your child will be less likely to form the idea that there’s something wrong with them.
This is not a one-time conversation. This is not something to discuss once and then never again. Foster an environment where your child can be open about their difference, their struggles and their experiences, so that you can develop a better idea on how best to support them with their unique needs.
2. Embrace the neurodiversity paradigm
I’m not going to explain how autism is conceptualised when viewed through the neurodiversity paradigm. Nick Walker has already done that here.
I want to focus on the practical aspects of how you can incorporate the neurodiversity paradigm into your daily life. I know that you’re probably sitting with one or more reports written by medical professionals. These pages and pages tend to highlight all the “deficits”, “delays”, “behaviours” and “abnormalities”. They don’t often go into your child’s strengths. I know that this can be overwhelming. Those reports are important because they open up opportunities to access the support your child needs, but they are pathologising.
You will need to provide those reports on request at times. But you do not need to use the words within those reports in conversations. You can rewrite them to find the words which reflect the awesome person your child is. I’ve written about how to do this here.
In addition to doing that, do away with functioning labels. Functioning labels tell you nothing about your child’s support needs. There is no need to perpetuate the myth that only some of us are more deserving of dignity and respect.
By doing this and embracing the neurodiversity paradigm, you will be showing acceptance towards your child. In a world that doesn’t accept us, create a family that actively works on acceptance of diversity. Celebrate it rather than try to suppress it, and you will nurture self-acceptance within your child.
But I need you to know that if you choose to do this, you might not receive the same level of support from other parents of autistic children. Parent support groups are often filled with people who dehumanise their children in the name of obtaining “support”. If you’re considering going that route, please consider that the support you might personally gain will cost your child’s dignity. No amount of support is worth that.
3. Be wary of therapies aimed at normalisation, “experts” and cure-promising treatments
You will probably meet up with other people who believe in “fixing” autism. They may suggest seeing a particular “expert”, trying a particular therapy, or doing some unethical treatment.
Please choose therapy wisely. Please do not subject your child to any therapy aimed at normalisation. ABA is probably the most well-known normalisation therapy. Before you sign up for that, please read this book written by the man who founded this form of treatment. While reading that, ask yourself whether people who think those thoughts about autistic people have any business being anywhere near us.
Read the posts written by ABA survivors. Neurodivergent K has written a series of posts addressing the effects of ABA:
- Indistinguishability from Peers: An introduction
- Indistinguishable from peers means: you don’t have autism related problems
- The cost of indistinguishability is unreasonable
- If you don’t use your words you won’t be indistinguishable
- The tyranny of indistinguishability: performance
Please do not subject your child to harmful treatments such as CD/MMS. Please always question the goal of any therapy/treatment/”expert”. If the goal is to “fix autism”, then you probably need to avoid it.
Your child does not need to be fixed. They need support and accommodation. Some therapy can be helpful, but please choose wisely.
4. Be wary of autism organisations
I plan to address this point separately in future as this is a topic that deserves its own post. I still think it’s important enough for parents who have a newly identified autistic child to address here too.
Before you decide to support an autism organisation, either by donating your time or your money, find the answers to the following questions:
- Do they solely focus on autism awareness?
- Do they include autistic people on all levels of the organisation?
- Did they include autistic people when the organisation was founded?
I’ll address each of those questions briefly because to do so in full would make this post way too long.
- Awareness cannot lead to acceptance
- Any organisation which says that their goal is to help autistic people really should include autistic people. Otherwise, how do they know what help we really need help with?
- See point #2. Including us as an afterthought highlights that the organisation’s founders probably see us as too incompetent to know what we need.
5. Explore the possibility that you may be neurodivergent
Many autistic adults discover that they’re autistic after they discover their children are autistic. I had suspected that I was autistic for many years, but I wasn’t identified as a child. Well, not to my knowledge anyway because my parents never told me what the therapists and psychologists said to them. During my son’s diagnostic process, I realised that many of the things the professionals were highlighting were things that described me too. It was only after he was diagnosed that I fully explored my own neurodivergence. Up until that point, I had just accepted that I was weird, maybe a little broken, and that nothing could fix me. My parents said as much when they stopped the final round of psychology sessions when I was a teenager.
You may discover that you aren’t autistic. Maybe, you’re neurodivergent in a different way, or perhaps you’re neurotypical. But the process of exploring those possibilities will lead you to increased self-awareness and self-acceptance. That’s mainly what this post is about: Helping you to help your child reach a level of self-acceptance.
So, there you go. Those are my five starting points. I could cover a lot more, but I hope that this – together with the links – will show you that there is a different path than the ones that the diagnostic process may have led you down.
If you have any questions that you feel I didn’t answer above, please let me know in the comments, and I’ll do what I can to provide an answer.
This post has been translated into Spanish. You can access the translation here.