autism · Uncategorized

I am an autism mom.

I am an autism mom. I write about autism from the only point of view I know: my own. I am Casey’s mother. I am not autistic, I am not perfect. I never will be. My thoughts, my points of view have evolved over the years, and continue to do so.

Casey and me
Casey and me

I am an autism mom. When Casey was diagnosed, all I could think about was “curing” him. All I could think about was wanting to get relief from the hours upon hours of screaming, biting, and hitting that we were dealing with on a daily basis.  I wanted him to be like his brothers. I wanted him to be able to connect with the world around him.  He spent anywhere between 5 to 10 hours a day in the throes of a kind of suffering I could not alleviate. I did not want him to suffer.  I did not want him to be autistic. I did not want to be an autism mom.

I am an autism mom and I write to other parents of special needs. I do not write on behalf of them. What I say isn’t the message of the parent community, but as one parent of one autistic child.  I write about the good and the bad, the wins and the losses of life with autism. I write about coming to accept my son for who he is, autism included. I write about what I’m learning. I hope that I am growing.

I am an autism mom and I look to autistic adults for direction, for guidance, and for a window into what is going on with my son. I look to people like Rachel Cohen Rottenberg,  Ari Ne’eman, Temple Grandin and my adult autistic friends for this perspective.  Autism parents like me need all the help we can get.

Autistic adults have spoken loudly about the “infantilization of autism” –  or “When members of the public envision the disability of autism, they most likely envision a child, rather than an adult” (Disability Studies Quarterly, Stevenson et al). This is a very real thing. When people think about autism, they think about children. This often makes the adults with autism feel invisible, and I’m not okay with that. Their voices are powerful and necessary.

I am an autism mom and I support and love the autistic adults that I have the pleasure of knowing personally and through their blogs and books. I cannot and will not speak for them because I feel like they are doing a better job of it than I ever could. I want my son to grow up to be the next John Elder Robinson or Steve Summers.  And right now, I’m doing the best that I know how to to teach him that he can be anything he wants; and that his autism makes him “different, not less”; and that it enables him to do things that he could not do otherwise.  In teaching him or writing here, do I always get it right? Absolutely not. So I’m asking for the patience and understanding of autistic adults as I try to navigate autism. And I promise these amazing adults nothing less in return.

I am an autism mom and I’m trying to understand. I’m trying to understand autism through parenting my child and through my association with autistic adults.

I am an autism mom and I’m begging you to try to understand me as well.


32 thoughts on “I am an autism mom.

  1. Oh, yes…every single word…

    I don’t know any autistic adults personally, but I am reading more autistic authors to try to understand their perspectives. This is a great piece.

  2. Thanks for writing this Lexi. You hit on so many points that I have not always been able to articulate. I can only write from my family experience. Keep on writing. Parents like me appreciate it.

  3. Absolutely. I think the thing that resonated best with me is that we grow. We learn and incorporate ideas into our parenting from both adult autistics and other parents, and it all helps drive us toward a place of greater understanding and acceptance.

  4. Wonderful and incredible. I love that you write “to other parents of special needs.” I can’t believe I sat in my own corner for so many years sorting it out on my own. I learned very quickly hearing other stories has helped validate my reality and maybe I am more normal than I thought. It is a daily thing. Somedays I’m on board somedays I want to jump overboard.
    Thanks for writing.

  5. You have a way of putting thins so simply… So perfectly. Thank you for this message, Lexi. You nailed it… Hard.

  6. You’re an awesome mom. 🙂 I just saw Temple Grandin for the first time last week, and it was one of the best movies I’ve ever seen. Eye-opening and inspiring. Love the “different, not less.”

  7. I am also a Autism Mom. I am new to your blog, You are great! I also have never tried to cure my Daughter, and Jenny McCarthy enrages me by even suggesting that it is possible. I work in the community of adults with disabilities for this very reason you are writing about. Our children become adults so to me there is no one better person to learn from then people who have experienced what my daughter will eventually need to know. My daughter is thirteen now, I have never gone to school for working with adults with disabilities My life is school. That was my qualification that got me my career. Thank you for being another AMAZING advocate for our children who will soon be adults. We need more parents like you! 🙂

  8. What a powerful, beautiful manifesto. I feel greatly inspired, in a very raw, down-to-the-core, refreshing way. Thank you.

  9. You astound me with your honesty and insight. Although I know some folks take offense to the things we write on our autism blogs, I know you are coming from a good place. We as parents just need to understand our children and our roles in their lives– now and forever. You help me understand my personal journey with my daughters, mainly because you don’t paint life with sunshine and rainbows all the time. Thank you for what you do here, in your wise little corner of the world. 🙂

  10. I agree with everything you write like so many others. My child is mentally disabled though she is not autistic and I cant find a community for us. All I know is that I feel the things you write. I feel scared to death. I love my daughter she is beautiful and caring and she is also mean and sad. please keep writing you have been able to help me!!!!

  11. the whole “autism wars” situation INSIDE the community is something i find hard to understand. we have SO MANY battles still to fight for support, acceptance and education with the broad public and the relevant governments.
    before autism touched my life, NEVER would i have thought to enter into such a confusing and divisive conversation when i first tried to connect online..

    1. I am an autism mom, too. My daughter is 27 and I so appreciate your mention of adults with autism. Her Royal Highness, Katie, the Queen of Autismland (a name she gave herself because she was homecoming queen in high school and believes that the title really invested her with royalty) says that she is “normal, just different.” Thank you, again!!!!!!!!!!!!!

  12. Thank you. My oldest has Epilepsy And My middle Child has Aspergers. Years of fighting for My children To be accepted, and to be able To flourish and succeed are finally starting To happen. Not in a big bang, but a Little trickle. Its a wonderful feeling. But then we have setbacks, Or medication changes and it starts over. Thank you for understanding. And writing about it.

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