I am a mother of two. One going on 13 who has been diagnosed with PDD-NOS with characteristics of Asperger Syndrome. It took me almost 10 years to get a diagnosis. Some of the reasons being having no knowledge, having no network or support, doing years of personal research on my own and most of the doctors we visited knowing less about autism than I did. During the 10 years of personal search and research I've met a lot of really helpful and wonderful people. However, only two of these individuals were black. I found and still find it amazing how none of the black people I know or interact with whether in a personal or business setting know very little if anything at all about autism. I've met and networked with many individuals who have helped me along the way to find out information, resources, my legal rights, programs, etc. None of them black. I'm sure there has to be many black families dealing with this disorder. Why are we not talking about it? Having family members with autism spectrum disorders is a mountainlike challenge. We need all the help and support available. Also being able to exchange information, resources and support with individuals who have similar cultures and experiences is very helpful and comforting.
I also notice there are not many black organizations or support networks available to families with autism. I've observed the network, support and commraderie amongst the associates I've garnered, who are not people of color. They really work hard to help their children lead quality lives as best they can. They are avid researchers and share information with one another. They're not waiting for someone to do the work for them, they are rolling up their sleeves and creating outlets, programs and experiences for their children. I'm not saying that black women are not. I'm just asking where are they?
I see many black individuals in the entertainment business who have children with autism spectrum disorders who are taking a very active role and voice about autism, and looking for ways to assist and support. I've also found one organization, runned by a black attorney in Atlanta, www.specialneedsnetwork.com. However, being an avid researcher the silence amonst the black community is almost deafening.
Why aren't black women/mothers talking about autism? I'd like to know. I'd like to network with other women of color who care for children with autism and to be of assistance by sharing what I've learned.
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Yes, I agree with you that we are not talking about autism. This piece tugs at my heart because my niece is autistic; my brother and his wife both healthcare professionals had a difficult time finding a network group to join in order to learn and share their experience of raising an autistic child.
Recently, I mentored a women who was raising an autistic child through my Compass business and it was enlightening! But, I can say that women of color do not like to share their personal experiences and pain with others, probably for fear of criticism and people " getting into my business" so to speak. However, with a mentor who is committed, it is so important for us to reach out, connect for balance and strength. Ladies, if we look back at our commnities we always seek the advice of our elders for the wisdom and spiritual guidance that has made us so strong and such a determined race of people.
So, lets speak out on autism; lets educate ourselves today and help future parents in the process.
Truesie > Marlene McCraySeptember 1, 2009 at 8:34pm
Your comment brought to mind a wonderful book entitled "Black Pain, It Just Looks Like We Are Not Hurting" by Terrie Williams - www.blackpain.org. It talks about depression in the black community and how it is difficult for us to reach out and the heavy burden we carry, not seeking out needed help and support. I highly recommend to everyone on this site.
Truesie > Marlene McCraySeptember 1, 2009 at 7:06pm
Thanks for your comment Marlene. I can imagine what your brother and his wife went through having gone through the same thing. Also the fact that there are a lot single parent families in our communities. I'm sure there are plenty of women taking on this huge responsibility alone. Speaking to one of the parents I network with she explained to me how she didn't wait on others because she saw the needs of her child. We likewise can't wait on others. We have to get together and make ways for our children who are affected by this disorder. Right now I'm looking for a location to hold a support group. Will keep you posted.
Thanks for responding. Yes we definitely need to talk and I hope to be able to facilitate some discussions and a support group in the near future. I think your website/products are great. I would like to promote them on my website if that is okay with you - www.sisterstalkingaboutautism.com. There have been studies that also show that children with autism have low glutathione levels which makes it harder for them to rid their bodies of toxins. Please check out my website at www.immunotec.com/livelife. We offer an excellent product that is safe and effective which helps the body to create more glutathione in the body. Please keep me informed on any projects or info on autism and related disorders.
We should talk. My nephew is autistic and I brought up a similar issue on the autism speaks ning network and kind of got chewed out by the "non colored" folks. My brother and I are interested in this. Also, the company I represent works closely with specialist in developing our products to support families and children with autism.
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Recently, I mentored a women who was raising an autistic child through my Compass business and it was enlightening! But, I can say that women of color do not like to share their personal experiences and pain with others, probably for fear of criticism and people " getting into my business" so to speak. However, with a mentor who is committed, it is so important for us to reach out, connect for balance and strength. Ladies, if we look back at our commnities we always seek the advice of our elders for the wisdom and spiritual guidance that has made us so strong and such a determined race of people.
So, lets speak out on autism; lets educate ourselves today and help future parents in the process.
Thanks for responding. Yes we definitely need to talk and I hope to be able to facilitate some discussions and a support group in the near future. I think your website/products are great. I would like to promote them on my website if that is okay with you - www.sisterstalkingaboutautism.com. There have been studies that also show that children with autism have low glutathione levels which makes it harder for them to rid their bodies of toxins. Please check out my website at www.immunotec.com/livelife. We offer an excellent product that is safe and effective which helps the body to create more glutathione in the body. Please keep me informed on any projects or info on autism and related disorders.
My contact info is here: www.discoverytoyslink.com/best-toys