Saturday, April 5, 2014

Say What You Mean

When you say, "I hate autism" what you mean is "I need a scapegoat for my hatred of my child's behavioral challenges. I am overwhelmed".

When you say "I wish there was a cure for autism" what you mean is "I want to replace this child with one who doesn't force me to confront the fact that society mistreats those who are noticeably different".

When you say "This (meltdowns, maladaptive behavior, inability to use verbal speech, need for global supports) is the true Autism", what you mean is "my experience of autism is the only one that is valid because I am not happy. I therefore resent families who say they are happy".

When you say "Autism destroys marriages", what you mean is "my marriage is falling apart so I am going to blame autism because if I don't I will have to deal with everything that caused our relationship to fail and I don't want to do that".

When you say "Autism ruined my career" what you mean is "I chose to quit pursuing a career and I regret that. It is easier to blame circumstances than to accept that I gave up doing something of my own free will and now regret that decision."

When you say "I can't die. If I die my child's life will be destroyed." what you mean is "My child has not been taught life skills. I do not know what accommodations and supports the law entitles my child to in order to allow autonomous living in the community. I do not understand what future planning means. I have allowed my child to become dependent on my sole care. I have not built a life outside of theirs, so I cannot view life without my child needing me. I do not trust the current options for my child's transition to adulthood, but do not realize I have the power to demand change in what is out there.".

When you say "Autism destroyed our finances" what you mean is "We made rash and sometimes high risk decisions in how our autistic child would receive therapies and treatments, and sank too much money we did not have into the idea that if our child received enough treatment quickly they might mask their autism and we could declare our child cured. But that didn't happen and now it is time to face the fact that we must now deal with the financial reality before us. We are financially overwhelmed and need help".

When you say "You are not like my child" what you mean is "My child's degree of disability makes me certain they will not have an autonomous life because I believe autonomy and independence are the same thing. I cannot imagine my child living in the community because the supports required for that to happen seem impossible to gain".

When you say "My baby is an angel" what you mean is "I need to infantilize my child because I can't deal with the idea that they are getting older and their intellectual differences will make life as adults challenging for them. So I will avoid those realities by never letting them grow up and grow old."

When you say "Vaccines caused my child's autism,"what you mean is "I cannot accept the possibility of my own genetic responsibility in my child's neurology. I am angry and want to direct that anger at medical science because they have failed to learn why my child's neurology is different and they have not found a way to mask that difference. "

When you say "I mourn my child everyday," what you mean is "I have created an imaginary child who I idealize and believe should be my child. When I am confronted with the reality of who my child is, I reject that reality and want my idealized child who would never have existed, and mourn for the fact that I can't replace my real child with my imaginary one. "

When you say "Autism took my child"what you mean is, " I am angry because doctors are not finding ways to improve my child's' ability to function better in society. I can't deal with any guilt that my child is autistic. So I will keep blaming everyone and everything, and by doing so show my neurodivergent children that I do not accept them as they are. It is too hard for me to fight ableism, fight for inclusion, fight for improving the quality of my child's life. So I will keep focused on blaming and demanding a cure, in the hopes that I will wake up one day and be told that my child's difference is not my fault, or that they can take a pill and make it all go away."

Say what you mean. 

Then look at what you are really saying.

Face your own fears and suppositions.  Consider seeking help if you feel overwhelmed and depressed. Family counseling may help clear up a great deal of sadness and frustration and this change will immediately make life for you, your family, and your autistic loved one better.

When you are in a better space ask yourself honestly what you really want for yourself and your neurodivergent loved one. Make a bucket list. Don't use autism as an excuse not to achieve in your own life. Find the accommodation and supports needed for you to do things with your loved one included. You have the power to change your own life and by doing so radically change the quality of your loved one's life for the better.

How your loved one became autistic doesn't matter. How will that loved one achieve the place in society that is their human right is what matters.

 How can you all be happy right now?

It begins with saying what you mean.


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