Living With Autism

The Black Family

May 2015

L I V i N G

with

Autism Spectrum Disorder (ASD) summarizes a range of developmental disabilities. It is a set of complex neurobehavioral disorders that include impairments in social interaction and developmental language and communication skills combined with, sometimes, rigid, repetitive behaviors. The disorder covers a large spectrum of symptoms, skills, and levels of impairment. It ranges in severity from a handicap that somewhat limits an otherwise normal life to a devastating disability that may require institutional care.

Now, that’s the very formal and clinical definition. Autism manifests Symptoms typically during the first three years of life. Some children show signs from birth. Others seem to develop normally at first, only to slip suddenly into symptoms when they are 18 to 36 months old. However, it is now recognized that some individuals may not show symptoms of a communication disorder until demands of the environment exceed their capabilities. Autism is four times more common in boys than in girls. It knows no racial, ethnic, or social boundaries. Family income, lifestyle, or educational levels do not affect a child's chance of being autistic.

Vernon R. Heard

Statistically minority families tend to get children diagnosed and in intervention programs at later ages. This may be due to parents' lack of information and resources to identify and evaluate the disability sooner. Autism experts agree that the sooner treatment starts the better, noting that between the ages of two and three there are rapid changes going on in the brain, especially in the area of language development.

A comment from Margaret C. Souders, PhD, CRNP, assistant professor of human genetics at University of Pennsylvania School of Nursing in Philadelphia, "Parents don't have to wait for the therapist to show up," said Souders. "Once they learn how to do the teaching, they can give therapy all day. The best hope for African-American children with autism and for any other kids with autism is for parents to get informed, be strong, and stick up for their kids. One mother getting past her fear, finding her voice, and pushing the envelope can change everything."

RESOURCES:

There are, thankfully, an increasing number of support groups, medical research and educational resources for autistic kids and their parents. This helps with imparting information that helps parents recognize early signs of Autism and assist with directing families to helpful and appropriate support programs. Information is available on what questions to ask and who to direct them to. There is a growing number of organizations that focus on Black families, and minority families in general, as these demographics tend to be the most underserved and undereducated about autism.

Gina and Germaine McEachern discuss raising their 5-year old autistic son Germaine, Jr.

One such organization in Dallas, TX is the team at the Keyshawn Vaughn Foundation (www.hatchinghope.org). The Keyshawn Vaughn Foundation’s primary focus is to increase autism awareness in underrepresented communities and to advocate for families affected by Autism Spectrum Disorder. Founder Sabrina Vaughn, created the foundation to honor her son Keyshawn and in response to her experience seeking services and real people to connect with after his autism diagnosis in 2012. The struggle to find services was the primary reason Sabrina committed to forming an organization to help other families find what she couldn't when her son first received his diagnosis.

The Keyshawn Vaughn Foundation (KVF) works with parents as a support group, they help families create an action plan for a child diagnosed on the autism spectrum and consult with families on day care and education decisions. They assist with identifying appropriate special needs programs within the local school system and are an overall advocate for parents raising autistic children. Sabrina notes that KVF also performs training sessions for child care centers’ staff members to educate them on what autism is and recognizing signs of autism. They train child care clients on having the tough conversations with families about potential autism. This equips child care providers with information they can then impart to parents and make recommendations for diagnosis with a developmental physician. Lastly, KVF launched their Steps For Autism Walk to raise autism awareness and funding for the organization. The event was held April 25, 2015 and will be an annual event going forward.

Below is a few more organizations and websites that are helpful resources for families living with ASD:

http://www.child-autism-parent-cafe.com/autism-resources.html

https://www.facebook.com/ParentingAcrossTheAutismSpectrum?fref=photo

https://www.autismspeaks.org/family-services/resource-library/other-autism-organizations

https://www.autismspeaks.org/family-services/resource-library/websites-families

APPROACHING ADULTHOOD
As noted, early detection and intervention are crucial to the developmental future of an autistic child. Some high functioning autistic children grow up to participate actively throughout their school years, into college and beyond.

The knee jerk reaction of parents is always to protect their child, with or without autism, and be the buffer between the world and their child. It’s important that families make greater independence a part of their autistic child’s evolution.

Whitney Eiland, mother of 19-year old Maya, discussed the anguish of her daughter enrolling at college today for the fall. “I almost had to sit on my hands to get myself to stay out of the application process. I had to remind myself to let her pose her own questions about the school and their academic and elective programs. She also had to take a test as part of her enrollment. I ended up taking off for a while to give her space to experience and take responsibility for this milestone independently. Being a mom, it’s never easy to let go with your kids in general but with Maya I’m always on guard.. or I’ve always felt the need to be anyway. She has to remind me, “Mom I’m grown now. I can do this. I’m so, so proud of her”.

Successes may come in large or small increments but they are successes and they instill confidence and pride

My friends Lance and Linda Whitfield are parents of a son, Nico, who was diagnosed with Aspergers.. Now, at college age he is an art and design student and doing well. His progress and successes are surely due to the Whitfield’s fighting for the programs and resources needed for Nico’s development. Linda, an attorney, discussed using her leverage as an attorney in her fight to ensure Nico got what he needed.. “ It helped being a lawyer though, I have to say. I was able to get a lot of services for him and get the school district to do things for me because I would sign my letters Linda Whitfield, Esq. It was effective but it was kind of sad when I thought about all the other parents that didn’t have the same kind of access or information, or the same education background. Their kids needed help too. I saw how easy it was to get pushed aside.” And Nico’s family’s diligence has resulted in successes for him. And of those successes Linda notes “I think having a child with a disability has kind of widened my perspective. It’s just different. It’s like, I can take small successes and they’re just great; just fantastic, you know.. Nico figuring out how to ride the buses in Los Angeles on his own, that’s a victory, you know what I mean? So that’s what I mean by ‘dialed down’. I define victory differently than I have before.

DL Hughley discusses the small victories he's witnessed with his 26-year old autistic son on Oprah's "Where Are They Now?"

While this article focuses on the experiences of Black families living with autism, the disorder knows no racial or socioeconomic boundaries. The key point for ANY family is to educate themselves on the scope of ASD and seek a diagnosis and treatment as early as possible. Child rearing is never easy but every child living with ASD deserves the best support feasible for them and unconditional love from their family.

Obviously I, as a writer, have no medical knowledge or direct experience with ASD but I do know that this disorder needs more visibility and awareness in the Black community. If this article helps to inform someone or spark a conversation OR helps someone look at a family living with autism with an informed point of view, mission accomplished.

Love to all,

V. Ray

#positiveblack