It’s one of the most common questions I get working with autistic girls and their parents. Is the label absolutely necessary?
And it’s a very valid question! One of the biggest difficulties with supporting autistic girls in school, and in life in general, is that they are excellent maskers. Masking is when a neurodiverse person mimics neurotypical behaviours to fit in. It’s often a subconscious behaviour and it’s usually much more prevalent in autistic girls than it is in autistic boys. It’s one of the main reasons why autism is so often missed in girls.
So it’s understandable why parents are reluctant to give their daughters a label like “autistic” when it carries so much stigma. If a young girl appears to be behaving totally normally in public, what’s the point in going through the stress of a formal diagnosis?
Honestly, I often wonder what my life would have looked like had I received my autism and ADHD diagnosis at 8 rather than at 18. The answer, I have decided, would be a lot!
In terms of education, I missed out on a lot of ‘reasonable adjustments’. Things like extra time in exams, smaller class sizes, special equipment and, most importantly, a way of learning that allowed my brain to actually absorb the information rather than hold on to random facts, not really understanding their context. A lot of parents worry that these sorts of adjustments don’t replicate the real world and to that I say, the real world has changed and is still changing! The moment I entered the world of work, I was given an “Access to Work” grant which allowed me to do the exact same jobs as my neurotypical peers at the same standard. My co-workers don’t know about the software on my laptop that reads emails for me or my weekly mentor sessions that help me organise everything! Without diagnosis, I would still be struggling with all these basic tasks and I wouldn’t have the opportunity to shine in my strengths!
Socially, a diagnosis would have prevented a lot of heartache. Just like most autistic kids, I had a hard time mixing with my classmates. I went to a total of five schools, changing my personality each time but still, I was unable to form any solid friendships! I eventually came to the conclusion that I was just an unlikable person. It was only when I received my diagnosis and learnt more about autism that I realised there was just a communication barrier! Now I can see where I may have gone wrong in friendships or where I might have misinterpreted people’s actions. My parents, had they known, would have been better equipped to help too. It wouldn’t have been assumed that I automatically knew all the super secret social rules and I could have been taught!
Most importantly, this lack of communication, not being able to pick up on social cues and lacking understanding of when a situation is dangerous can have disastrous effects on undiagnosed autistics. It’s one of the reasons why drowning, eating disorders, grooming and s*xual a*use are so tragically common among autistic individuals. As an adult, I find myself on a constant journey of healing from dangerous situations I walked into as a child but, with my diagnosis, I can recognise my lack of “neurotypical spidey senses”. Just because I see nothing wrong with a person or a scenario, I am aware that danger may still lurk. I can consult the people I know to be safe and make sure I go about life with the necessary vigilance. Had I been diagnosed sooner, a lot of this could have been avoided!
Despite believing that every autistic child should seek a diagnosis if they are able, I can see many arguments for the contrary! There is every chance that if I was diagnosed, a lot of expectations would have been put on me. Not every autistic person struggles with every symptom. For example, I have pretty good sensory processing. It’s actually almost at a neurotypical level! Had I been diagnosed as a child, I may have been provided with earplugs or not been taken on school trips that took place in loud environments. As a child, I probably wouldn’t have questioned that and would have missed out on a lot as a result.
However, to me, the answer is simple. I’m a big advocate for letting autistic girls figure out their own brain and its strengths and weaknesses because we’re all so different! If you have an autistic daughter, have all the adjustments in mind, but consider not just applying them all at once the second she gets her diagnosis. Instead, work with her, keep communication open and find out exactly what she’s struggling with. Adaptations can be applied where necessary.
As for the label, I think it’s important for teachers to know. But it’s equally important that they know exactly what autism means for her. It’s not going to be a one-size-fits-all so make sure they’re not just creating the same plan for every autistic student in the class.
As she gets older, let her pick and choose who she wants to know about her autism. In my opinion, more than anything else, the autistic ‘label’ is there to help the autistic person and to let them know that there’s nothing wrong with them. We’re not broken, just different!