First, allow me to say hello! I know I have been gone for a while, but any of you who have busy lives will understand that some times we have to take a break and focus on the world we live in.
As you can tell by the title of this post, this is going to be a sort of therapeutic vent session for me, as I am pretty angry with some of the treatment we have received. Aiden and I have been pretty involved in the Autistic community since his diagnosis in May 2013, until this year. I was set to get involved in instruction and taking a more active role in community involvement when that seemed to just fall off the face of my proverbial map. The individual who was set to get me involved with all that ceased communication with me on the topic entirely.
I went out to lunch, after a fundraising event, with one of the co-founders of the class I was set to start teaching. During the course of this lunch this individual, who I thought was a friend, asked me if I had gotten a second opinion on Aiden's diagnosis, because it did not seem that he was truly Autistic.
As you can imagine I was floored by the comment, especially from someone who has a child with low functioning Autism. I have ceased involvement in the organization completely and recently allowed my membership to lapse.
There seems to be a type of discrimination within the Autistic community. My son seems to not be "Autistic enough" to be involved in the Autism community. As you all know my son has high functioning Autism. We've had him involved with ABA and OT over these last two years and I'd swear by them both. The coping skills they have taught him have been priceless and I continue to watch his behavior and mannerisms improve greatly. The earlier the intervention occurs the better off they are in the long run. Aiden still stims. He still has sensory processing struggles. He still has Autistic tendencies. Aiden still has and will always have Autism Spectrum Disorder.
I am grateful in a selfish way, and I'm not afraid to admit it. I'm grateful everyday his Autism is high functioning. In a way I hoped other people would be happy for us, knowing their struggles. I'd like to make an emotional comparison, not a literal one at this point. To me it would be like being angry someone else is cancer free when you yourself have cancer. I feel for those with low-moderate functioning loved ones. I don't pitty them, I feel their pain. Their daily struggles I can only imagine and I see the frustration. I see the monetary costs. I know it's overwhelming, but I do not presume to know it all about their daily lives. People see my son and say "Well I don't see how he could be Autistic. He doesn't act like it at all" and I just want to scream: "Do you know how much work that takes?!" Do you know how on the ball I have to be as a mom to scratch that surface? Do you know how many fights my husband and I have had over money and therapy needs? Could you even begin to understand how perceptive I have to be to him at all times to maintain that sweet little boy you see before you? How much I have to assess his surroundings to keep you comfortable?
I suppose I am further angered because my son will be the one to advocate for others, from a literal first hand perspective. He is the future of the Autism community and just because he is verbal, capable, and able to express himself, does not mean he does not have his own struggles with this disorder. How could I expect anyone to understand that? You cannot see the characteristics right away when you see him, so how could he possibly have Autism? You cannot see my psoriatic arthritis, so how could I suffer from the disease?
It is positively maddening when a community of people who scream and fight for education and acceptance, ostracize one of their own. It is absolutely counter productive for a person to assume they have "seen" Autism, when this community preaches that no two Autistic individuals are the same. This community demands the public to accept Autism and then refuse to accept my son, who is High Functioning, but not "challenged" enough to be classified as "Autistic enough" for them. At least that is the message I am receiving based on their actions and words.
The emotional toll of a diagnosis is high. Anyone who has ever sat through a diagnostic meeting will understand what I mean. When someone questions that journey all those feelings come back. You remember everything about it and how you felt. It makes you angry and it hurts, especially coming from people you should feel "safe" talking to about this situation. People who come from an area of like experiences.
I suppose I just expected more. I'm just grateful he is still to young to have formed attachments to people in that organization. I wish them the best on their unique Autism journeys, but my family will no longer join them on their path. It's sad, but necessary for our overall well being.
I hope that this helps someone else out there not feel so alone. High Functioning Autism is still Autism. All we want is acceptance, just like anyone else.
Thank you all for understanding. Please feel free to follow us on Facebook: https://www.facebook.com/AidensHereos
As you can tell by the title of this post, this is going to be a sort of therapeutic vent session for me, as I am pretty angry with some of the treatment we have received. Aiden and I have been pretty involved in the Autistic community since his diagnosis in May 2013, until this year. I was set to get involved in instruction and taking a more active role in community involvement when that seemed to just fall off the face of my proverbial map. The individual who was set to get me involved with all that ceased communication with me on the topic entirely.
I went out to lunch, after a fundraising event, with one of the co-founders of the class I was set to start teaching. During the course of this lunch this individual, who I thought was a friend, asked me if I had gotten a second opinion on Aiden's diagnosis, because it did not seem that he was truly Autistic.
As you can imagine I was floored by the comment, especially from someone who has a child with low functioning Autism. I have ceased involvement in the organization completely and recently allowed my membership to lapse.
There seems to be a type of discrimination within the Autistic community. My son seems to not be "Autistic enough" to be involved in the Autism community. As you all know my son has high functioning Autism. We've had him involved with ABA and OT over these last two years and I'd swear by them both. The coping skills they have taught him have been priceless and I continue to watch his behavior and mannerisms improve greatly. The earlier the intervention occurs the better off they are in the long run. Aiden still stims. He still has sensory processing struggles. He still has Autistic tendencies. Aiden still has and will always have Autism Spectrum Disorder.
I am grateful in a selfish way, and I'm not afraid to admit it. I'm grateful everyday his Autism is high functioning. In a way I hoped other people would be happy for us, knowing their struggles. I'd like to make an emotional comparison, not a literal one at this point. To me it would be like being angry someone else is cancer free when you yourself have cancer. I feel for those with low-moderate functioning loved ones. I don't pitty them, I feel their pain. Their daily struggles I can only imagine and I see the frustration. I see the monetary costs. I know it's overwhelming, but I do not presume to know it all about their daily lives. People see my son and say "Well I don't see how he could be Autistic. He doesn't act like it at all" and I just want to scream: "Do you know how much work that takes?!" Do you know how on the ball I have to be as a mom to scratch that surface? Do you know how many fights my husband and I have had over money and therapy needs? Could you even begin to understand how perceptive I have to be to him at all times to maintain that sweet little boy you see before you? How much I have to assess his surroundings to keep you comfortable?
I suppose I am further angered because my son will be the one to advocate for others, from a literal first hand perspective. He is the future of the Autism community and just because he is verbal, capable, and able to express himself, does not mean he does not have his own struggles with this disorder. How could I expect anyone to understand that? You cannot see the characteristics right away when you see him, so how could he possibly have Autism? You cannot see my psoriatic arthritis, so how could I suffer from the disease?
It is positively maddening when a community of people who scream and fight for education and acceptance, ostracize one of their own. It is absolutely counter productive for a person to assume they have "seen" Autism, when this community preaches that no two Autistic individuals are the same. This community demands the public to accept Autism and then refuse to accept my son, who is High Functioning, but not "challenged" enough to be classified as "Autistic enough" for them. At least that is the message I am receiving based on their actions and words.
The emotional toll of a diagnosis is high. Anyone who has ever sat through a diagnostic meeting will understand what I mean. When someone questions that journey all those feelings come back. You remember everything about it and how you felt. It makes you angry and it hurts, especially coming from people you should feel "safe" talking to about this situation. People who come from an area of like experiences.
I suppose I just expected more. I'm just grateful he is still to young to have formed attachments to people in that organization. I wish them the best on their unique Autism journeys, but my family will no longer join them on their path. It's sad, but necessary for our overall well being.
I hope that this helps someone else out there not feel so alone. High Functioning Autism is still Autism. All we want is acceptance, just like anyone else.
Thank you all for understanding. Please feel free to follow us on Facebook: https://www.facebook.com/AidensHereos
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