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December 8, 2008

Is Autism Color Blind?

This is not a piece about segregation.

This is not a piece about discrimination.

This is a piece about awareness.

American Aboriginals have been raised not to talk about family business even amongst those not within the immediate family circle.

As children, we learned “not to air our dirty laundry in public”.

As children, we learned how to associate with, identify with, and categorize… life.

As children, we learned all things are truly not equal.

An apple is not an orange.

An orange is not an apple.

White is not “Black”.

“Black” is not White.

The media doesn’t tell many stories of American Aboriginal families affected by autism, and it’s probably because not many of us are outspoken about living with it.

So, when Holly Robinson Peete and Toni Braxton came out and told the world that they, too, were living with autism?  Well, that news was probably a shock to our community.

I, for one, am very grateful they are speaking out.

I’ve been searching for a deeper connection within the autism community ever since my son was diagnosed.   Before Holly and Toni “came out”, I only had Jenny to identify with, because she is a mother to a child on the spectrum.

I’ve been looking for someone or a group of someones {wink} who understood the many paths I’ve taken, not only as a person of color but also as a person of color with a “disabled” child.

It was that connection that had been lacking.

Through Ning, I’ve befriended mamas of all shapes and colors.  And I now feel more “connected”.

Autism doesn’t just affect the White population.  It doesn’t see color or understand color.

My son was diagnosed “late”; he was nearly 4 years old.  If it hadn’t been for his Godmother, who knows how old he would have been before I had received any answers.

Was his late diagnosis due to color?  Some would argue that is was.

I am not one of them.

His late diagnosis was due to ignorance, lack of empathy, and lack of compassion.

I do know that had we remained in New England, I would have had my answers prior to his 2nd birthday.  You see, his pediatrician was not one to stand by and let anything fall between the cracks where his development was concerned.

But we didn’t stay.

We moved.

And for nearly 3 years, I was dismissed by pediatrician after pediatrician after pediatrician.

Again, some would say it was due to color.

I came across an article by a fellow advocate, Wanda Brown.  The article is entitled Disparities Among African-Americans and Autism.

I have enclosed the article in its entirety (with the author’s permission) because I found it to be an interesting read.

I welcome your thoughts and comments.

Disparities Among African Americans With Autism
by Wanda Brown

Autism is a complicated neurodevelopmental disorder now affecting 1 in 150 children at an early age, and is expected to last a lifetime. Autism can often be diagnosed in children as young as 18 months old, and affects every race, ethnic group and socio-economic status.

A child with autism will show different behaviors than typical developing children. Parents become concerned that their child may lack eye contact, be deaf, is not yet talking, resists cuddling, needs repetitive routines, have repetitive interests, and avoids interacting with others.

These behaviors may begin shortly after birth or develop as a child grows older.

Symptoms may range from mild to severe. Mental retardation is commonly associated with autism. Epilepsy may also develop in some cases.

African Americans and Autism

Each ethnic group has unique genes that can interact with autism-associated genes to slightly change the course of the disease. For example, certain symptoms associated with autism, such as delayed language development and problems handling daily life tasks, are more severe in African American individuals with autism than in Caucasians. Such differences make it important to understand the range of underlying genes that add to the disorder in other ethnic groups. The most effective drugs are those which aim at the specific genes that are malfunctioning, so researchers must look further to identify which genes play a role for each ethnic group.

Study: National Institutes of Health, the National Alliance of Autism Research, the Hussman Foundation and the Autism Genetic Resource Exchange.

Source: Investigation of autism and GABA receptor subunit genes in multiple ethnic groups.

Healthcare, African-Americans and autism

There are clear racial disparities in healthcare and special education, parents and caregivers must help arrest to ensure a brighter future for our loved ones with autism.

Studies have consistently reported negative biases toward minorities in the areas of diagnosis and treatment.

Black autistic children were diagnosed later, received more misdiagnoses than Whites, and were more likely to be misdiagnosed as having organic psychoses, mental retardation, or selective mutism.

Clinicians may interpret autism symptoms differently in children of different races.

African-Americans are less likely than Whites to see the same doctor over time. A pediatrician who treats a child over time may recognize autism sooner than others may.

All children with autism are eligible to receive a free appropriate public education, services provided by your state, behavioral treatments and enrollment in a classroom geared toward their condition.

Early diagnosis and early intervention is critical for a better prognosis. Minority families and families with lower incomes or limited education had more difficulty entering the early intervention system. National Early Intervention Longitudinal Study

The probability of parents having a second child with autism is 1 in 20.

Excerpts from Race Differences in the Age at Diagnosis Among Medicaid-Eligible Children with Autism, David S. Mandell, Sc.D., John Listerud, M.D., Ph.D.

Disparities in Early Intervention

Children with autism are expected to have a better prognosis with early diagnosis and early intervention.

A recent national study found:

  • The length of time from concerns to early intervention for children with developmental disabilities is much longer than the 5.2 months national average. Children with developmental disabilities on average enter early intervention at age 20 months, much later than other children.
  • Parents of children with developmental delays had more difficulty than parents of children with established conditions or children at risk.
  • Minority families and families with lower incomes or limited education had more difficulty entering the early intervention system.
  • Some families were not aware of a written plan for goals and services.

Source: National Early Intervention Longitudinal Study through a grant from the U.S. Department of Education to SRI International and FPG Child Development Institute

Special Education, African-Americans and autism

Minority children with disabilities all too often experience inadequate services, low-quality curriculum and instruction, unnecessary isolation from their nondisabled peers and hardship.

African-American students are about twice as likely as White students to be educated in a restrictive, and separate educational setting. Minority disabled students also have much higher rates of school disciplinary action.

Excerpts: Racial Inequity in Special Education, 2002, Daniel J. Losen & Gary Orfield, Editors, Cambridge, MA: Harvard Education Press.

Discrimination in School Discipline

“Zero Tolerance” policies have an unequal impact on minority children and children with disabilities. The amended Individuals with Disabilities Education Act provides wide-ranging protections for children with autism and other disabilities. These provisions were meant to make certain under the appropriate circumstances, that the impact of their disabilities are taken into consideration when giving out punishments. In many circumstances, school officials are ignoring the law, and parents and students are probably unaware of their rights or unable to enforce them.

Source: Opportunities Suspended: The Devastating Consequences of Zero Tolerance and School Discipline Policies

Students of color are also disproportionately suspended:

  • African-American children only represent 17% of public school enrollment, but 33% of out-of-school suspensions. White students, 63% of public school enrollment, represent only 50% of suspensions.
  • In Minnesota, for example, 25% of African-American students were suspended.
  • Latino students are also singled out for discipline; in Tennessee, more than 38% of Latino students have been suspended.
  • Research shows that these disparities are not due to poverty or inherently bad behavior. Students of color are more likely to be suspended for non-violent, minor misconduct such as disobedience, disruption, and disrespect of authority.

Source: Civil Rights Project School Discipline Action Kit, which answers basic questions about discriminatory school discipline practices, and suggests ways for parents to fight them in their children’s schools.

African-American Adults with Disabilities

Among high school students with disabilities, about 75% of African-Americans are not employed two years out of school.

Three to five years out of school, the arrest rate for African-Americans with disabilities is 40%. Minority disabled students also have much higher rates of placement in correctional facilities.

Excerpts from Racial Inequity in Special Education, 2002, Daniel J. Losen & Gary Orfield, Editors, Cambridge, MA: Harvard Education Press.

What can we do to help overturn these disparities?

We can start this process today by taking six powerful steps to overturn these disparities and help African Americans with autism reach their full potential.

Be persistent! Parents and caregivers must be persistent and get their child’s healthcare providers to listen and act in response to your concerns.

Know your child’s rights! Learn about the federal special education laws and state regulations which exist to ensure your child with a disability receives an Individualized Education Plan and related services they can benefit from in the least restrictive environment.

Seek help! There are advocacy groups and educational advocates accessible to help you get a “free appropriate public education” that every child with autism is legally entitled to. Access any needed supports and services provided by your state.

Join a national autism organization. There is power in numbers. Our voices can and will be heard within a powerful group message.

Get involved! Attend local parent support group meetings to learn what issues are important to persons with autism and their families, and what steps are necessary to address them. Start networking with other parents.

Take action! Write or call on local and congressional lawmakers to report your issues and concerns. Make them alert to how autism affects your child and family.

Autism is not hopeless, and parents are not helpless.

We can learn about important issues, how to advocate for our loved ones and cause immediate reform and better outcomes for all persons with autism.

Resources

Click here for practical ways to help, plan and manage daily living with autism.

African Americans and Autism

Disparities in Health

Disparities in Special Education

NAACP is a 21st century advocacy organization that fights for the advancement of minority groups by bridging the gaps in seven advocacy areas including education, economic empowerment, healthcare, criminal justice, civic engagement, international affairs and poverty issues.

The book Covenant With Black America outlines ways to address challenging issues facing African-Americans today, like health and education.

About this author
Wanda Brown is wife, mother, grandmother, volunteer, presenter at parent support groups, member autism support groups, national autism organizations, former legal assistant, service coordinator, and Board member to non-profit organizations, autism Advisory Groups, appeared on Cable 6 TV, XM Radio One, Tavis Smiley Radio, CNN Radio, WDIG and KCSN Radio.

© Copyright 2005 – 2008. All rights reserved. Please feel free to publish this article on your web site and/or in your e-book or newsletters without any changes to the article, the author’s resource information at the end of the article remains intact, and the links are live (clickable). Please e-mail a link to your site where the article is posted.

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