This is the part that I always hate so much about April is Autism Awareness/Acceptance Month. The end. And that is the problem…most people think…
I did my part. I put up with all those silly posts on Facebook. I liked loads of them. I even read one or two of the ones that looked really interesting. But I am glad it over. Now things can go back to NORMAL.
But for those of us for whom autism/neurodivergence is a part of our daily lives…this is ‘normal’. What is normal anyway?
I share things about autism all year round. And to be blunt…if you can’t handle the neurodivergence in my life…there is the door. Let the knob hit you where the good goddess split you.
Having said that…I am glad that I took part in Autism Acceptance month. I am especially glad that I attended #autismfestival17.
So in summary…
I began this month with the expressed purpose of writing a book on parenting your child with Pathological Demand Avoidance…or high-functioning autism with demand avoidant traits as the current language and PanKwake’s official diagnosis says.
Along the way, I found myself getting angrier and angrier…at other parents with autistic children. Frustrated with them and the ‘experts’. With the amount of misinformation. How much we continue to promote and use strategies that are twenty or even fifty years old. Therapies that many autistic adults decry as harmful.
You see…I love children. I especially love NEURODIVERGENT ones. I finally was able to put my finger on it the other day when these words just slipped out of my mouth…
I love kids. It is adults that I have trouble with. When you stop believing in Santa Claus and magic.
Let’s be honest…it is hard to write a book for people you don’t like. Your feelings come through. You are condescending. And I was…I still am. When you do not connect with your intended audience…well, you are doomed to failure.
I was faltering…in the blog…and getting more and more angry and depressed about what I saw happening to ‘my babies.’ If I could, I would take in and adopt every neurodivergent person out there. I saw this meme yesterday…
…and I thought…
Yeah, but that means EVERYTHING is missing!
Love and acceptance are the solid foundations upon which we build our identities and self-worth. Without those, the struggles are like climbing Mount Everest…barefoot and naked.
And that is why I get so frustrated with other parents. Their potential for doing serious, life-long damage to their child…even if they believe they are doing it all out of love.
I saw this one the other day…and I thought…this person said in a meme what I thought I needed to write a whole book about…
And PanKwake continues to teach me…to turn me into the person I am supposed to be. So rather than talk anymore about the things I continue to struggle with, I want to end by focusing on the wonderful things that I learned this Autism Acceptance month.
- Neurodivergence – That word is really growing on me. Though I do not see autism or autistic as dirty words, I see huge potential to reduce division like profoundly, Asperger’s, high-functioning or Pathological Demand Avoidance. A word that encompasses them ALL yet recognizes the unique differences of the individual…I like that and want to learn more.
- Speaking of which…I learned that those labels are not truly useful…profound, high-functioning, etc. I met a young man who considers himself non-verbal, but who makes every single word he does speak a powerful tool to help others. And he challenged everything I thought I knew about autism. And made me re-think how I view my daughter’s high-functioning.
- Right down to…how I speak to PanKwake and other neurodivergent individuals. I am loud. I speak quickly. And I talk too much. The truth is that is all a cover for my own extreme introversion. But it is the least effective way of communicating with PanKwake. She brought that point home when she told me I was Furby…loud and annoying. I need to work on this one…as I do my anger/frustration.
- ASK! – Whether it is autistic or neurodivergent, going some where, doing something, or what to eat…parents and others tend to just do for those with autism. Do what they think is best…what they think that person wants…what the ‘experts’ say is best. What we really need to do…is ASK THEM! I have always tried to give PanKwake choices…but she is a tween now…and I need to respect her even more. Listen to what she WANTS/NEEDS. I am trying to get into the habit of knocking on her bedroom door before entering.
- Parents need to listen to the REAL experts…neurodivergent adults! It was so enlightening to hear four very different neurodivergent adults speak about their experiences at #autismfestival17. I sat there thinking…this is what parents need…to see the potential of their children. See all that they can be.
Yes, I still want to write a book. But not one about parenting a child with Pathological Demand Avoidance…or high-functioning autism…or even neurodivergence. I want to write a book about parenting your human being…neurotypical or neurodivergent. It does not matter. Because for us to move forward…to true acceptance…we all need to recognize…
We are ALL HUMAN BEINGS!
That is the lesson I learned this April is Autism Acceptance month. And I hope it will make me a better one…more compassionate…not just to the neurodivergent but to their neurotypical parents who really for the most part are just scared, lonely and lost. And maybe one day, I will be able to bridge the gap and write that book. But that day is not today. I still have so much more to learn myself. That is the thing…
Wisdom is knowing that the more knowledge you have, the less you know.
I am getting there…slowly.
A final huge THANK YOU to Swansea Medical School and its staff especially Gareth Noble, Hazel, Anna and Robert Parton. And to the wonderful speakers…Dean Beadle, Jamie and Lion, Jon Adams, and Robyn Steward. As I said before…
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