Being an autism mom
Raising a nonverbal autistic child is emotionally draining. It’s hard for all parties involved. It’s hard for Charlie who can’t communicate beyond basic needs (like “I want water”) but it’s also hard on us, his parents.
Today I’m going to discuss a controversial subject. I mean, to be fair, it seems like everything is controversial in the world of autism. Should we use“people first” language? Should I say “Charlie is autistic” or “Charlie has autism”? Is ABA therapy torture? Are functioning labels harmful? Do vaccines cause autism? Is the puzzle piece symbol offensive? You’ll always find someone trying to guilt you for making, what they think, are the wrong decisions for your child.
Raising a nonverbal child is hard enough… but some people feel the need to add insult to injury. Anyway, realizing I was going to be raising a child with severe nonverbal autism required a process of grieving.
Autism and grief
Yes, grief. When Charlie was diagnosed, so many dreams went out the window. All my expectations and everything I’d imagined doing with my child were gone. Of course I’m thankful for his physical health but that does little to comfort me. Severe nonverbal autism… You don’t think it will ever happen to your family, but it can. It happened to us. Charlie is wonderful but we’d all be happier if we could hear his little voice telling us about his day or simply begging for a toy. Sometimes I get overwhelmed by Jude’s constant talking but then I remember how amazing his whining actually is. Music to my ears.
I don’t know why this is so hard for some people to accept. Parents of autistic children have to grieve. This is actually a healthy part of the process after receiving an official diagnosis.
I think there’s a stigma around grieving an autistic child because of the “accepting autism” thing. You read everywhere about people saying how autism makes them who they are, how autism is amazing and should be embraced, there’s even an autism pride day. Darn, I wish my child was high functioning enough to be proud of being autistic. While I love my boy, his quirks and his personality, if there was a way for me to give him the ability to talk, to show love, and to learn self care skills, I’d do it in a heartbeat.
Brenna2019-04-02 at 5:58 AM
I found your website today and I just wanted to say I relate very closely to your articles as my daughter is nonverbal and on the severe end of the spectrum as well. I find myself in tears as I read some of your posts, it is extremely hard and I know exactly how you feel. So many things you miss out on and then feel ashamed that you feel the way you do because you love them so much. Never being called mom by them, not knowing what the future holds and wishing you could somehow understand. I also agree with you that it is unfair that all diagnoses fall as on the spectrum. This makes things difficult as well, people are always like well I knew so and so who is autistic and they blah…blah…blah…you just want to tell them they have no idea! My daughter also has major sensory processing issues and tantrums that are becoming harder to manage as she gets older. Anyways I just wanted to say thanks for sharing your experiences and beliefs.
mo2019-04-30 at 11:19 PM
I love your writings btw I am a Registered Behavior therapist
Asif2022-08-12 at 11:09 PM
I am in the exact spot as you are; while reading your article it felt like this is my words. I feel sad, and defeated for my 7.5-year-old non-verbal autistic son.