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My autism isn’t their autism.

Following Eileen Lamb’s lines (Eileen is a mother, herself autistic, to two autistic kids, both in different levels and whose blog I cite here: https://theautismcafe.com/ ) I want to send a message to all those struggling with severe autism, their families, their carers and their communities: You guys are NOT alone and definitely NOT forgotten.

I hear and acknowledge you. A lot of people do.

Severe autism exists.

There, I say it for all those who can’t say it.

Everyone has their opinions, but it is indeed a fact that not all autistic people can communicate. As Eileen says, communication is a privilege.

I don’t mean to seem as if I know how severe autism feels and how it is, for I am not living it nor in contact with it. I just want to remind everybody that it is there, that it is a reality.

I have mixed feelings about using functioning labels. They can be misleading but they can also give you an idea of where the person is at the moment of their diagnosis (and maybe during their life) and the support they might need. I’m not talking about their prognosis, because I’ll always support this idea: everyone on the spectrum can improve and prove people wrong if the rights supports are in place.

But, having that in mind, I also want to remind you that autism is a disability (not a gift indeed) and it will impact someone’s life and also their families’. There’s nothing wrong with acknowledging that and raising acceptance at the same time.

Fights within the autistic community are completely useless and don’t help. They just make things harder when we are supposed to be together in this and support each other.

No, I don’t think autism is my superpower.

I think autism is a part of me that can sometimes be incapacitating and many others, disabling.

Don’t fear it, disability is not a dirty word.

It’s ok to be disabled, but it comes with frustration and (almost most importantly, grief) of course it’s ok to grieve your/your kid’s diagnosis. Maybe you don’t grieve the diagnosis itself but the challenges and implications that come with it. It’s ok. You’re not ableist. You’re a person.

If society did better, autism would be easier to handle (for autistic people but also for their parents) but it doesn’t mean it would stop being a disability. It doesn’t matter how understanding people are and how little society judges, if someone can’t communicate clearly, it will be hard. Educating people can give place to other forms of communication, but remember not everyone can use an alternative communication device or sign language.

That’s why I think parents have all the rights to “speak” for their kids, if you’d like to say it so. I don’t think others know that kid better.

The problem comes when someone (let it be parent, or autistic person) thinks they’re absolutely right in their comments.

Autism is so broad no one is always right.

There’s no “right” or “wrong” in autism, there’s difference experiences shaping each person’s perception of autism, and they are all valid.

I want to remind you that severe autism isn’t my, or even your autism.

It’s someone else’s.

They should be portrayed more in the media. If you look at TV closely, films often revolve around geniuses and “awkward”, genuine autistic people. I have seen little representation of the other side of autism. The 25% -30% non verbal side, where people may need 24/7, lifelong care. The side of people who don’t get an accurate education and won’t live independently.

As a final saying, I don’t want people to think I’m catastrophizing autism.

I’m just referencing an often overlooked reality, without sugar-coating it, in which autism isn’t easy.

Stay strong!

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