Many of the misunderstandings concerning what Low Functioning Autism actually is and how it impacts on the lives of those who experience it, have arisen due to the manner in which the words of those with High Functioning Autism, have been digested and held up to the broader community as a shining example of how all forms of Autism should be treated.
Yet the fact that this happens so frequently is not the fault of Adults with High Functioning Autism, but rather the by-product of several different organizations attempts at delineating or hi-jacking, the Autism debate.
As a parent, I know myself how easily our emotions can be manipulated because I too, in the past, have fallen into the same trap of raging against the perceived words of those on the High Functioning end of the Spectrum, particularly whenever I felt that their views provided no sense of understanding or justice, for the way in which my son experiences Autism.
I wondered how it could be that the words of Autistic Adults could simultaneously cause me to juggle so many different perspectives.
Often I felt caught, trapped in a web of half spun truths, suspended somewhere between rage and understanding, fear and insight, lost and found, over and over again, in the land of Autism.
Lost, when it came to understanding my son’s experiences.
Found, when it came to recognizing my own experiences and understanding my daughter.
If it hadn’t been for the writings of adults with Asperger’s Syndrome, or High Functioning Autism, I would never have begun to discover my own place on the spectrum.
Nor would I have been able to see the signs of Asperger’s Syndrome in my daughter.
Or have had the information necessary to encourage those health professionals around me to take my concerns for my daughter seriously.
I acknowledge that I owe a huge debt of gratitude to every Autistic Adult, both Low and High Functioning, who’s been willing to speak out.
It is because of their strength and their insight, that I now understand, not only myself, but my entire family on a much deeper level than I would ever have achieved without their wisdom.
They’ve also helped me to understand that when those adults who do speak out, actually take the time and the effort to do so, it is often at a great personal cost to themselves.
They often suffer the indignity of having their words recklessly bandied about or deliberately misconstrued for the purposes of others agendas.
Yet they can no more choose how the world at large will interpret their words or control how their ideas may be manipulated or distorted within a campaign of misinformation, without their knowledge, anymore than a river can control an ocean.
Even though I know that the world at times, spins on its own axis of denial and deceit, and that none of us can predict where and how, or in whose ears, our words will land, I still occasionally find myself wearing my outraged mother’s hat for a very different reason.
You see, I know that the truth is, that in our family, we all experience Autism very differently.
My son’s experience of Autism is vastly different to my own experience of Autism and that of my daughters.
The similarities between us are few and the differences between us can be as stark as night and day.
Autism has manifested within all of us in differing ways.
Our own individual journeys towards understanding Autism also bear little to no patterns of similarity.
My son was diagnosed at 4 years of age.
My daughter at 13 years of age.
And I in my 40’s.
So I think what we most need to understand when it comes to Autism Awareness and Acceptance, is that there are no hard and fast rules as to how it will either impact on a life, or how those impacts will in turn, be understood by the people around us.
Some like my son, will be impacted upon profoundly, others like myself, may live a life of otherness for 40 years without ever understanding why, and those like my daughter, will live a life where she can revel in her quirkiness because she has been given, that still rare and exceedingly precious gift, of being able to understand why she’s different.
I know that we, as a family, have all benefited from the wisdom of others with Autism.
Just in different ways.
So to me, whether or not adults with Autism have anything valuable to say is no longer the question, for I know that adults with Autism have valuable insights to share.
The question I think that’s more pertinent for today’s Autism debate is:
Which organizations or individuals are using the knowledge derived from adults with Autism and just what are they using the words of those with Autism to say?