When you are too autistic or not autistic enough


Eliza was diagnosed with autism and moderate-severe learning difficulties when she was three years old. She attends a special education school in which she is thriving in and she is a very academically able child if the correct environment and support is in place for her and her needs. The fact she doesn’t attend mainstream raises a few eyebrows sometimes and usually accompanied by “Oh, well she looks so normal” or “She doesn’t ‘look’ autistic” or similar statements. Invisible disabilities/difficulties can cause so much frustration and stress to us as a family because of how others see them (or clearly don’t).

Autism is a fairly invisible condition especially to those that have no previous knowledge or experience with it. For some children it can be quite disabling, depending where on the spectrum you ‘sit’ as such. Eliza’s biggest giveaway is her stimming that she does when she’s happy and excited. Her arms and legs shake, she hums a certain noise and she jumps up and down. Although to many they’d still not realize she was autistic because of this, they may just see a very happy child. Invisible conditions can leave you in quite a grey area when it comes to support and services. For Eliza, in half of this grey area is the diagnosis. To some, they assume that being autistic automatically makes Eliza unable to do things. Diagnosis can bring support, information and access to certain therapies etc. But it can also bring a lot of misunderstandings, myths, assumptions, judgements, ignorance… the list goes on but you get the idea. People talk over her and ask me “Does she like…. Would she prefer to….” without considering that my now 9-year-old daughter can actually answer for herself. Then there is the talking in front of her “Oh, so sorry to hear she has autism” ….  Firstly, she’s awesome and just different, not broken. Secondly, she’s not deaf! We’ve been in scenarios in the past where adults have decided to not let her try certain games or tasks because they don’t think she’s capable. They didn’t even let her try. They used her diagnosis as a reason to refuse things and as an excuse to not let her try. It’s frustrating and certainly not inclusive.

The other half of the grey area is that Eliza looks ‘normal’ so she’s not disabled/autistic enough! Yes, we’ve heard these actual words many times and they don’t get any less annoying each new time either. Claiming DLA or PIP is a nightmare to so many families. Not only is the process long, overwhelming and stressful there are always a handful of people you’ll meet that tell you that, because she’s not physically impaired or disabled, she shouldn’t qualify for help or that based on how young she is and that she doesn’t deserve money to help her with her needs. Family have even had issues with the fact Eliza gets DLA. They don’t agree with children getting financial help because they are ‘just children’. Yet they don’t ask why she needs the money. They don’t understand the cost of sensory lights, black out dens, sensory toys and clothing (Especially when a super sensitive sensory child will only wear certain materials). They don’t realize that childcare in the form of a 1-1 with the correct experience can start at ten pound an hour upwards. Because she can walk and talk, she’d judged by many as to what they feel she should be entitled to (or not).

So you find yourselves being passed from ‘not autistic enough’ to ‘are you sure she’s capable, being autistic and all’ scenarios. That’s why we do our best to raise awareness and understanding of autism. Thankfully we have some incredible friends and family that support us and accept Eliza for the wonderful child she is. No judgements, no assumptions. Just love and understanding.

** This blog was originally done for Firefly click here **


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