The Real Battle Special Needs Families Face


“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience. Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine. This is NOT my experience of my child. This is NOT my family’s experience. This is not the experience of many, many families I know. And do not assume this is my daughter’s experience either. Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter — every family and every autistic person will agree or feel the same. Nothing is as simple as any one-word descriptor. The ongoing battle I find myself in is with the inaccurate information about autism and autistic people. The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter. The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote? That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy and therefore excluded. Exclusion is the battle. Non-acceptance is the battle. Intolerance is the battle. Hatred is the battle. Prejudice is the battle. Discrimination is the battle. Misinformation, inequality, superiority, arrogance, ignorance and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon — that’s the battle.

This post originally appeared on Emma’s Hope Book.

 

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