I want to talk about difference. Diversity. Be it in our physical appearance or in our neurology and how we process the world. So many times I hear parents talk about wanting their child with a disability to grow up and have a “normal childhood, just like everyone else”. I’m always taken aback, slightly shocked and have to stop myself from saying, “Really??!! THAT is what you want your child to have!”. Thankfully 99.9999% of the time I’ve been able to do this.
I know I had a semi-normal childhood and it was, well… just stressful. Not only did it increase my anxiety, but it led me to have unhealthy habits and some very unsafe experiences. This did not stop in my childhood and adolescence though, it persisted into my adulthood. Actually, the effects of it have only recently started to be alleviated upon me receiving my diagnoses. I am Autistic and ADHD,
I was not expecting all the positive effects of recieving a formal diagnosis. I went in expecting confirmation of my Autistic brain, after walking beside my children during their diagnoses, but the ADHD “bonus label” as I call it, threw me at first, but I totally get it now. That however, is another story for another day.
The positive effects I’ve experienced since learning about my neurology and how I process the world has manifested in the full spectrum of emotions, and a myriad of “ah-ha!” moments. Moments of me going, “Ooooohhhh! I now understand why XYZ happened”, or “Oooooh, I just realised that wasn’t a panic attack, that was a meltdown/shutdown”…. these moments continue to flash into my mind, although further spaced apart as my brain now seeks to take all the information about my life that didn’t quite make sense and fit into it’s proper place now that it has this new information. What my label has allowed me to do is to truly understand myself, accept and forgive myself (mainly for being so hard on my self) and to come to a place of true understanding and love for myself. The experience has been the most powerful spiritual and personal journey and I’m grateful for it.
Now, back to why I think it’s important to NOT have our children strive for normality, rather to celebrate their diversity. I suppose it comes down to me understanding the importance of self knowledge (it truly is power). When we truly understand ourselves, we understand what we need in order to thrive. For Neurodiverse people this is generally different to the norm. Because of how our society is designed, especially in school settings, labels give us the power to insist on accommodations our children need as there is legislation that protects them and guarantees them this right.
Understanding how we operate and process the world, allows us as parents, teachers, employers and ultimately the person themselves to know where they are coming from and provides signposts for where and how to progress through life to optimise success and reduce negative experiences. For example, did you know that females on the Spectrum are statistically at an increased risk for sexual assault and rape? I didn’t. But now, a lot of things that have happened to me in the past make sense. It stemmed from me not understanding the social cues and rules in certain environments, not being adept at reading between the lines in conversation and knowing that sometimes not responding was taken as a response. I feel had I been aware of my differences, I could have been taught in a more effective manner how to handle certain scenarios as I was growing up, particularly in high school and into early adulthood. However, in my case there were no labels to give, I wouldn’t have ticked the boxes. But had their been, it would have provided a sign post on how I would have benefited from explicit sexual education and safety. Having spoken to many other adult Autistics, I know I’m not alone in these experiences.
That is just one of a myriad of examples how knowing is empowering. However, telling a child about their labels is not enough. It is about how we frame the disability to our children, the picture we paint for them. And it all starts with how WE perceive it as parents. If we perceive it as a loss, a negative or worse, a tragedy, then our children will pick up on this. Even if we don’t use those words. Neuroscience shows us that our emotions are literally, energy in motion and are not contained within our bodies. Our children are effected by them at a vibrational/energetic level. If what we say about our child’s differences does not match our emotions towards it, there will be a discord, a disconnect the child will perceive but not understand. I feel as parents, it is worth exploring our hangups (around anything we are teaching our children about) in order to make sure we don’t pass on or project our issues onto them. This is where my visit to the psychologist helps me. Thankfully, as I’m always too hard on myself, she reminds me that we need to aim for a 30:70 ratio. That if we are doing OK 70% of the time and mess up really bad 30% of the time we will still produce a healthy functioning adult (this is backed by research).
I want to share with you how our family approached the discussion of diagnoses. It started with me researching and learning from Autistic adults who’ve grown up with the Autistic label. This led me to learn about Neurodiversity, identity first and the social model of disability. It basically contradicted all I had been taught. To put it simply, our family sees our labels of Autism and ADHD as part of our identity. Not all of who we are, but it is an integral part of our identity. Just like I’m female, brunette, Latina, etc none of these things on their own are me, but they all form an important part of my identity. I am Autistic. I am not a person with Autism. Iam a person with high blood pressure, but I am Autistic. I’m not carrying around my Autism like baggage, or as a disease that needs to be cured or managed, it is an integral part of how I see and process my world.
After that we looked to books, kids books. We researched and found several awesome books explaining how Autistic brains were different from a strengths based approach. We read it (not saying it was like them at this point). By the end of the first book, my then 5 year old said to me, “This is just like me.” Once I confirmed, that they were right, they proceeded to tell me, “Ooooh, that is why I am different.” They knew. At 5 years old, just having started school, they knew. But they didn’t know why. This provided a platform for positive healthy discussion, instead of NOT exploring/validating the feeling of “different” they were feeling but they lacked the words to express. If we hadn’t explored it at that point, it could have easily turned into a negative feeling/sense of self. Thankfully, we were able to discuss it and put the frame around it we wanted. For us we focused on, “Different, not less”. We used the game or phone analogy. Android vs Apple, Xbox vs Wii. You can play the same games but the disc you use has to suit the machine or the app you download has to be designed for that type of phone. At this point, I self identified as Autistic, and we used myself vs dad as an example of the difference. That was enough for that child.
When it was time for my next child to have the same discussion, we had the books ready but they weren’t interested. In the end, they were getting frustrated because I was interrupting their play and asked me, “Is my brain like yours mum or like dad’s?”, I explained it was like mine, and they said, “Ok, ” and went back to happily doing whatever it was they were doing without me annoying them. That was all that kid needed.
We focus in our home on what we are each passionate about, what our strengths are and that is our starting point. If we feel we need to improve, we talk about what is needed at that point to achieve it. Growth mindset is a huge part of this, as is personal learning goals. Thankfully this is the approach their school uses too. We also, always go back to discussing the beauty of diversity, the blandness of what it would be like if everyone was the same. We have little sayings, I call them our mantras that we as parents aim to say at least once a day to reinforce the message. We say things like, “You are perfect just the way you are”, “It doesn’t matter what others think of you, it matters what YOU think of you”, “I love you and this will NEVER change”, “Focus on you”, etc. etc.
Now please understand, I’m not trying to paint some Mary Poppins style parenting here. We are far from perfect, our family has a lot of challenges, we access support and we are all doing the best we can with the information we have. It is not one thing we do, rather the collection of things we do in order to help our children understand themselves, how they process the world and how to be themselves fully. We have bullying challenges we work through, we have friendship dramas and broken hearts, sibling rivalry and even physical fights. These things do not disappear or NOT happen because we are raising our family with a positive, identity first approach to disability. However, we are building their resilience within a framework of love and acceptance instead of one of deficits and limitations.
Let’s rewrite the societal narrative where striving for sameness and normalcy is a goal. Let’s teach our kids to be self aware. To know their strengths and weaknesses and how to use their strengths to get better at things they find challenging. Let’s teach our kids to be their own advocates, to feel confident in sticking up for themselves in terms of the things they need in order to work successfully, feel safe and thrive. Let’s not aim to shelter them from bullying at school, rather let’s equip them to learn and acquire the skills and strategies to successfully manage bullies. I have yet to work or attend a school or workplace without one. Let’s follow their lead, embrace their uniqueness, model for them how to talk about difference with others. Let’s empower them ditch the “normal” narrative and write their own.
-Christina Keeble, Neurodivergent Mum