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September 26, 2012

Falling Through the Cracks; When African American Children DON'T Get Diagnosed

Do a cursory web search on "African American's" and "Autism" and you will notice one clear trend;

Autism Diagnosis Often Occurs Later for Black Children
Under-representation of African Americans in autism genetic research
Autism diagnoses tend to come later for African-American children

We are not at the table. Our voices are not being heard. Our needs are not being studied and our children are falling through the cracks. Okay, okay, so I am a little biased, I have 3 children on the spectrum, so I tend to be a little more concerned than the average parent. This is an issue that is not being adequately addressed.  

First and foremost, let me state what this is NOT about;  its not about money, its not about cures, and its not really about race.  Its about access and outcomes.  If you don't have the access, you don't get the outcomes. Truthfully an African American child on the autism spectrum has no greater special need than a white child on the spectrum. In fact one study suggest that it is actually socioeconomic status not race which determines outcomes for children with autism.
.....children of highly educated parents reap greater benefits with respect to early diagnosis for autism and consequent opportunity for engagement in treatment, net of the severity of their disorder, than those whose parents are less educated. In general, children of high socioeconomic background continue to be diagnosed earlier than the less privileged, and although the gap has diminished it remains significant.

The key is early diagnosis. Children who are diagnosed earlier have better outcomes than children who are diagnosed later. Children benefit from specialized therapies like speech, occupational and ABA based therapies at an earlier age which can be crucial to increasing their later quality of life. Depending on what state you are in, many of these therapies can be obtained through and paid for by medical assistance if you qualify and/or early intervention. Most doctors know about these services and can easily refer children with developmental delays to these programs. Is this where the breakdown begins? Are doctors not referring our kids to be developmentally screened or are parents not informed about developmental milestones? It could be a combination of both.  In my own personal experience, it was I who asked my child's physician for help when my son started to regress. She then referred me to Early Intervention.

It is usually at this point where the conversation stops.  In my research I could find no substantial initiatives to improve the numbers of African american children getting screened for autism.  Why is this?  I have a theory, one I haven't seen readily discussed.

In another sphere there is a campaign to decrease the over representation of African American male students in special education.  Advocates and parents are trying to get our misplaced male children out of special education and back into regular classrooms.  This movement is in response to the racist practice of funneling black children with perceived behavior issues into special education classrooms. The NEA (National Education Association) states on their Blacks: Education Issues page;
Far too often, Black students—males in particular—are unnecessarily placed in special education classes, while the number of Black students who take honors and advanced courses remains significantly below that of other groups.
Hmm?  Now let me think.  What other group of individuals is also overwhelmingly male? Could this be the reason why black parents shy away from early developmental screening and diagnosis?  An unconscious aversion to involving their child in the special education system? As an advocate, I can admit that dealing with school personnel is daunting. For the average parent with no training, the special education system can be extremely intimidating. Even with IDEA regulations, there are some schools that try to bulldoze families into education plans that are far from individual.
Even if the two issues are connected, I can't say with any confidence that this is the primary force in the later diagnosis of African American children. One must also consider the general distrust that Black parents have for doctors;

A cross-sectional survey of parents who accompanied children to a primary care clinic found that 67% of African-Americans distrusted the medical establishment compared with 50% of white parents (P=0.04), Kumaravel Rajakumar, M.D., of the University of Pittsburgh, and colleagues reported in the February issue of Archives of Pediatrics and Adolescent Medicine.Distrust was inversely associated with education, so that while 74% of black parents who had less than a high school education were wary of doctors and researchers, only 44% of those who were college graduates shared that feeling (P =0.03), the researchers found.
- African American Parents Distrust the Medical Establishment 
Here we are back to the education of the parent; one of the leading predictors of socioeconomic status, driving the issue of trust in the medical establishment for black families.

Unfortunately, we don't have an autonomous black community where we are all on the same page when it comes to the social issues that effect our families and even if we did would this issue even rate in the top ten of "black issues?" No, I don't think it would.  Here is why it should.  The latest data from the CDC state that 1 in 88 children have been identified with an autism spectrum disorder and in the black community 1 in 98.  I am not trying to scare anyone, I hate statistics. What I hate even more is people falling through the cracks of society - a nonverbal adult who was never given access to assistive technology and has no functional communication skills other than vocalizations. Or teenagers with severe behavioral issues being heavily sedated and restrained. I can't tolerate vibrant and intelligent individuals that have the potential to live and work in the community being underestimated and stifled.

So with all this talk, do I have a solution? Yes I do. Of course I do. In researching for this post, I noticed a number of splinter, grass roots attempts to address this issue. I believe that all of us who have been working on a small scale in our own communities should band together and form a greater network to start creating our own PSA's and materials to disseminate nationally. This campaign has to go hand in hand with an advocacy component to address the misuse of the special education system as a warehouse for "problem" black youth. Possibly creating a parent curriculum on how to navigate the special education system and advocate effectively for your child -- one for parents of children who need special education and one for parents who are trying to get their child out of special education. In addition screening must be culturally competent and be able to get to the families who aren't seeking diagnosis due to fear or mis-education. Also, let's not forget about our Hispanic brothers and sisters (an incidence of autism of 1 in 127) whose children are also diagnosed much later and whose presence is also missing from the table.

No more kids falling through the cracks, Autism Awareness, now in black, brown and yellow.

Please comment and share your ideas or techniques to build autism awareness in the African American and Hispanic communities.

September 6, 2012

You Know Your a Difficult Parent When.......

Back to school can also mean back to IEP (Individualized Education Programs) meetings with the school district for many parents with special needs children.  I already have 2 scheduled for the end of next month.

I was talking to a friend this morning who was on her way to her child's meeting. We were discussing ways to say things and later I got to thinking, "am I a difficult parent?" One of my child's teacher left our school district over the summer so my daughter started school with a brand new teacher who I haven't met yet.

The paranoia in me started to flow; "I wonder what Miss X told Miss Y about me?" Exchanges from IEP meetings past started flowing into my mind and then I was faced with the possibility that this particular teacher may have thought I, little old me, was difficult. I am older (and hopefully wiser) now and I can see where and upcoming meeting with me may have been something to avoid.

For the podcast; Are you a difficult parent? I discussed one person's opinion from a blog I read in my search on what makes a parent difficult. I didn't necessarily agree with her reasoning, I thought the author was a little heavy on the parents. I apologize for the sound during the broadcast.

Not wanting to revisit what was covered on the show, I decided to make my own list of how to tell if your a difficult parent from a humorous point of view.

You Know Your a Difficult Parent When;

- school security comes to greet you at the door

- your child's teacher ask to record all your phone calls

- other teachers and staff who don't know your child, know you

- your IEP meetings are scheduled off school property

- the phrase "calm down" is used more than once

and last but not least

-your child's teacher moves out of the district over the summer to avoid dealing with you!

That's my little list, hope it made you laugh and I hope it made you think.

Seriously, I stand behind parents whole heartily when it comes to dealing with school personnel.  I know just how tough it can be to constantly request the things your child needs and be ignored, dismissed and condescended to. Every once in awhile, you do need to put the niceness aside and get real in order to get your point across.  The key is not to do too often and to make it count when you do it.

The key thing to remember is the people sitting across the table from you are human, they deal with the same seven deadly sins we all do; greed, sloth, wrath, pride, lust, envy, and gluttony. I try to give teachers as much respect as possible and I always reward effort, even if the results are little to none. A willing party who is willing to think out of the box is the most important characteristic in a special education teacher.

But that's just my opinion, tell me; one are you a difficult parent and two, what do you like to see in your child's teacher?

Comment and a Lisa Frank unicorn will knock on your door tonight.

Doesn't get any better than that, does it?
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