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How My Generationally Neurodiverse Family Informs My Advocacy

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I am a mother to three children, two of whom have an autism diagnosis. I also have ADHD and social communication traits that are not yet diagnosed.

Being a neurodiverse family has its fun times and its struggles. On reflection, the difficulties may be different to what a “typical” family experiences, but how would I know? Autism is all that I’ve known in my family life; we have shown traits in my family for generations.

When you are from a family like mine, autistic traits are “just how the kids are in our family,” something  I regularly hear from family members, and to which I tongue-in-cheek reply “Yes, that’s because we have a lot of autism in our family.” I think it’s hard for an undiagnosed adult with autism to look at a child with autism and see that the way they navigate the world is nothing but familiar and “normal” to them.

Within my family we have a lot of mental health difficulties, drug and alcohol addictions, depression and inability to sustain work. I believe this is the result of generations of undiagnosed autistics who did not get the support they needed. These difficulties were my initial driving force for firstly getting a diagnosis for my children, and are now my driver for getting appropriate intervention.

I am grateful yet sad for the past generations that were misunderstood within my family. In fighting for my children and supporting them, I feel in a way I am doing those other family members justice. Through understanding my children’s autism presentation and getting support for them, I hope it will stop the depths of pain my children would otherwise feel in life, and in some strange way, help heal the past hurt felt by previous generations.

I feel grateful to have had this opportunity to identify autism in my children, when for those before it was previously misunderstood.  I also feel grateful that within my training it has given me the courage to question those who are deemed as in authority and knowledgable.

I understand from my experience that it is difficult for those to understand autism, a way of thinking that has previously been accepted as deviation of personality which now (quite rightly) is regarded as needing support. I understand why those deep intrenched thoughts of ‘well there has always been people like this’ confuses people. I also understand from looking back at those unsupported what the consequences of that ‘lack of support’ looks like.

I used to feel angry and frustrated at the teaching and health professionals who do not understand my children’s diagnosis. I now understand that autism, especially in my children, could be deemed as mild in presentation. The professionals’ lack of help was just an indicator that they do not understand. Someone cannot help it if they do not know how. I have therefore taken a different approach. I have decided to educate and teach as I go.

I have promised myself that I will always do what is best by my children. When I am questioned and challenged by professionals who seem hostile or unsympathetic, I will remember that they just may not know or understand what autism can look like, and the consequences and outcomes a person with autism may face if they are left unsupported. I have promised myself that no matter how frustrating getting support for my children may be, it is an opportunity to educate someone in a different way of thinking.

I believe if we all move forward in doing this collectively, minds will change, people will learn and future generations of autistics will continue to be better understood than the previous generation. I feel hopeful that as a society we are at a turning point of understanding and supporting autism appropriately. I believe it is up to us professionals on the ground who live autism lives: the parents of autistics, the autistic adults, the autistic professionals. It is our duty to pave the future and educate the educators as we go.

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Thinkstock photo by Chalabala.

Originally published: November 6, 2017
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