I have so much on my mind regarding how we discuss autism in the minority community that this will be a two-part post.
Autism is not a topic that is discussed a lot in my world. We have no problem telling others when we have conditions like diabetes, arthritis, or even hypertension. However, when it comes to developmental disabilities we tend keep these issues private. Why? I believe that there is a genuine fear of being stigmatized by others. We don’t want to put our business in the street.
Think about the positive impact we can make in someone’s life, if we speak openly about these issues. Think about the family members, neighbors, and friends who can be helped because they knew what to look out for. Open communication can lead to earlier diagnosis of conditions like autism in our children. It can help our children get a head start on early intervention.
Numerous articles have been published stating the glaring fact that minority children are diagnosed with autism at a later age than Caucasian children. My own child is an example. Angel was diagnosed when he was 4 years old.
To my fellow parents with children on the autism spectrum, we cannot raise our children in a vacuum. Autism is not a dirty secret. It is a reality. The more we know, the more empowered we can become.
Supporting Each Other
Another issue that I need to tackle is the way we support each other when it is revealed that a loved one has autism. Here are some of the words of support that I have been offered, since we got Angel’s diagnosis last fall: God will provide. Leave it at the altar. Just pray. Trust in him. Don’t worry. It will be okay.
I know these words come from a place of love but sometimes they can come across as platitudes. I guess sometimes people say them because they really do not know what else to say. I guess…
Don’t get me wrong, I appreciate the support. Don’t get me wrong, I am a Christian who believes in God. I believe that he will provide. I also know that as a parent when I got the news of Angel’s diagnosis, I felt a sense of profound loss for what his life could have been. I am not asking anyone to feel sorry for Angel or me. He is a resilient child. I am a resilient mother. We are pressing on.
If you need some ideas on how to offer support to a special-needs parent, then here are a few that I find helpful:
- Share autism-related news articles or even information about a therapy that the parent can explore further. (Just share. Don’t push.)
- Support a cause that benefits children with autism. This can be as simple as signing an online petition or making a donation to a reputable autism organization.
- Show a certain level of sensitivity when discussing people with special needs. The “little yellow bus” jokes have to stop. My child rides one and I know many wonderful special-needs parents who put their children on little yellow buses every morning.
- Show compassion and empathy when a child with autism or any special-needs child has a meltdown.
- Offer to help out once in a while. We may seem to have it all under control but trust me the help will be appreciated.
- Refrain from bombarding us with your “cures” for autism.
- Stop minimizing our feelings about our child’s diagnosis.
- Respect the way we choose to raise our child.
- Pray for our child and our family as a whole. (Yes, prayers are still and always will be welcome.)
I realize that some of these issues can affect people of all demographics but I need to address what I know first-hand.
What would you add to my list? Are developmental disabilities openly discussed in your family?
I look forward to hearing from you.
P.S. Come back tomorrow. I will be discussing how we can become more informed and I will include an action list for parents on before and after an autism diagnosis.