Our initial Autism Awareness Month article discussed the facts and statistics correlating to this neurobiological disorder. In this post, I will share some personal knowledge, describing how autism affects my family and my views on how the focus of Autism Awareness Month needs to change.

Shifting the Focus of Autism Awareness Month

“Quite frankly, I believe that the primary focus should be on autism action in this country. 1 in 44 children in this country has autism—1 in 35 in NJ. We still don’t know what causes autism. There is no cure. It is a devastating lifelong disability with co-morbidities such as bipolar depression, epilepsy, severe immune deficiency disease, etc. It is a spectrum where most people with autism in this spectrum have severe profound autism. They are nonverbal, require help to take a shower, are still in diapers, have severe challenging behaviors, and will never be independent. These facts are the forgotten population and the main reason why the focus needs to shift. And when they turn 21, they fall off a cliff where they have no services at all.

The focus also needs to move now to taking care of autistic adults because autistic kids grow up to be autistic adults, and they deserve support and services to reach their best potential. So that’s where I am concentrating my fight as my beautiful Aidan will turn 21 in 2 years, and I will fight to make sure he will not be part of the severe profound autism population that is forgotten, and I will fight for all of them, not just my son.

Autism is not a blessing, and if I could take it away from my son, I would do it instantly. Aidan is my blessing. I am blessed to be his mother. I am blessed with his unconditional love, affection, and unbreakable bond with me. He is the strongest person I know, and I gain strength from him. Today I celebrate my son, not his severe autism. Aidan, you are the light of my world and always will be.”

Aidan and Johanna

I am not only a special needs attorney and advocate; I am a mother to a beautiful son who continuously motivates me to help change the world for the better. And I wake up every day trying to make a genuine difference, taking actions that ensure the well-being of Aidan along with all the other people personally affected by autism.