What type of support system did you find or have to put in place?
I expected my mom and husband to be on the same page with me, but initially they weren’t there yet. I gave an ultimatum: Get on board or get gone! I just couldn’t do it alone. I’m lucky because they came around quickly. There is an 80% divorce rate among families dealing with autism.
Unfamiliarity may have contributed to your husband and mother’s initial response. Today, is everyone offering encouraging sentiments?
I have had members of my own family say that they still aren’t really able to admit that RJ even has autism because of their pride and ignorance. They were not thrilled about us speaking out on it but since then, we have been able to help force this issue to the front burner. We have ignited dialogue.
Often in the black community, discussing mental developmental issues is taboo. How can we overcome this stigma?
We must embrace mental health as a community and break away from this cultural fear of taking care of ourselves mentally. It is very dangerous to ignore autism due to “social embarrassment.” I am so fortunate to have been raised without such hang-ups. [Waiting for treatment] can cost your child valuable intervention time that you cannot ever recoup.
Do African Americans have the same resources and support as other ethnic groups dealing with autism?
We have the same access to info but we don’t investigate it like we should. Our cultural “pride” keeps us from talking about it more. Get out of denial quickly and advocate like crazy for your child.
What are your top tips for parents caring for an autistic child?
Be sure to look into dietary changes. And know that the Internet is your friend. I scoured the Internet, went to seminars, and talked to other parents dealing with autistic children. Intensive and early intervention is key. I really like Vital Interventions Accessible (www.vianow.org); they advocate biomedical treatments that we have had a lot of success with.
What should parents who have a recently diagnosed child know?
There is hope and a lot more treatment options available, as well as funds accessible to pay for them. [In the '90s], the treatment suggested was not very comprehensive. We were only told about your basic intervention therapies, such as individual treatments, with no mention of diet or environmental contributors. Today there is so much more.