“Autism Twitter Day: A Digital Scrapbook”

This slide show does an amazing job explaining what took place on December 16, 2008!  I was proud to be part of it!  It was an amazing day!

Thank you, PF Anderson, for putting this together!  Bravo!

The rest of you… enjoy!

[slideshare id=855621&doc=asdautismtwitterday-1229572866190311-2&w=425]

When Autism Grows Up, How Prepared Are You?

I couple of months ago, I blogged about wanting to learn more about autism… from the perspective of an adult who was living with it; a self advocate.

There isn’t enough awareness about Autism Spectrum Disorder and Asperger’s Syndrome in… adults.

What happens to our children once they’re all grown up?  Who will represent them?

Lisa Jo, About.com’s Autism Guide, brought up an interesting topic the other day that gave me pause.

Although, her post spoke of Autism Speaks (because it is viewed as “the voice” of our community), the gist of her post was this… is the adult autistic community being properly represented within organizations that were founded to “help” the ASD community?

Here’s an excerpt from that post.

Some suggest that it’s unreasonable to expect Autism Speaks to include autistic adults in their organization because most of the best-known, most articulate adults with autism are not supportive of a “cure.” And, after all, they say, Autism Speaks is all about curing autism.

But of course not all articulate adults with autism are “anti-cure.” And even if they were – Autism Speaks is NOT all about curing autism. They are now involved with advocating for insurance for families with autism; providing grants for community programs for people with autism; providing diagnostic tools for parents and doctors. In fact, they even have a large portion of their site dedicated to education for people with autism.

Who knows more, cares more, or is more invested in financial, medical, recreational, vocational and educational programs for people with autism than – people with autism?

I italicized the end to make a point.

I know I don’t know what’s it like to be “autistic”.  My experience with autism has been as a parent to a child living with autism.  In addition, I’ve yet to meet an adult on the spectrum, so I’m clueless about spectrum life once puberty or adulthood has been reached.

At times, I feel ill-prepared for what’s-next.  Yet, I know that if I keep doing what I’m doing for HRH, everything will be okay.

I also know that I’d feel this way if my son was NT.  I’m a parent, and it’s my job to second-guess my abilities.  {wink}

Last night,  I was told about an award-winning documentary, Autism: The Wall That Knows No Limits, that was produced by a young man on the spectrum.  His name is Mike Peden.  Cool cat!  Love his energy!

This is what Mike had to say about autism and his work.

Autism is a mental disability that impairs a person’s central nervous system and how it operates, particularly in sensory awareness. In effect, autism impairs a person’s social awareness and communication skills.

However, it’s also a complex disorder, meaning no two cases are alike, and because it can’t be physically detected, is often ignored by unaffected humans. Although boys are four times more likely than girls to have autism, it knows no social or ethnic boundaries.

What was originally a project for my electronic art class became my first television program giving viewers an overview on what autism is, how it affects people, how other people respond, and the attitude taken towards it.

I hope this program enlightens you on one of the most prominent disabilities today.

Listening to Mike, I got a glimpse of how an adult male has learned to live with autism.  Like most people on the spectrum, Mike looks “normal”.

And like most adults on the spectrum, Mike has made great strides partly because he is the one who made the decision to take control of his diagnosis, and he stopped letting it control him.

Definitely a mentor for today’s spectrum youth!

Before I go, ponder this if you will…

  • As a self advocate, do you feel you are properly represented, not just in society, but within the community?
  • As a parent advocate, what are you currently doing to ensure your child(ren) are properly represented once they reach adulthood?

I also welcome your thoughts on the documentary.

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.

Autism or Not… We All Deserve A Little Privacy.

While waiting for my son’s speech session to finish up, I chatted up another mom in the lobby.  I had overheard her talking about recent hair loss, and I wanted to tell her about some natural remedies.

As one would suspect, the conversation eventually turned to our children.

Her son, now 15, was diagnosed when he was 3.  As he was leaving with the new therapist, she pointed out his inability to speak conversationally… meaning in full sentences.

She also pointed out that for every question the therapist asked, he responded with a one-word response.

Autism or not, how many teenaged boys do you know that have a lot to say whenever they’re in the company of a “hot chick”?

I mean, really?!?!?  How many?

She also went on to discuss his other “problems” like ADHD, Oppositional Defiant Disorder (something I had never heard of before today), Scoliosis, and something else I can’t recall right now.

Then there was her other son who has ADHD and Tourette’s Syndrome.

My conversation with her got me to thinking about something.

Why do some parents feel compelled to point out the “negatives” in their children… to strangers… in public?

Autism or not, don’t our children deserve a little privacy?

Maybe I’m an oddball.  Okay, I know I am.  (I was dropped in a trash can on trash day, head first, at 2 months old, and I ain’t been the same since.  I have an evil older sister; we still don’t speak.  {wink})

Now, let’s get back to that oddball statement, shall we?

I’m the parent who only has positive things to say about my son.  I mean, look at this face…

october-2008-pictures-004

How could I not?  I mean, seriously!

Don’t think I’m calling this woman a bad mom because I’m not.

As a parent on the spectrum, I know how meeting someone who “understands your life” can make us feel part of something bigger than ourselves.  I understand that “belonging” is very important to some.

Perhaps, this mom just needed someone who would listen, and I was happy to oblige her.

However, I hope that she will come to realize that some of her son’s traits are actually quite typical for a boy his age.

Too Much Ego in an Autistic World?

The commenters on Lisa Jo’s blog seem to be inspiring my posts this weekend.  😉

Today, Lisa Jo wrote about Autism and the Happy Medium (basically, finding balance in our lives).  One of her commenters happens to be one of my favorite Twitters, and he’s an all-around good dad to a child on the spectrum.

It was his statement that made this post possible.

It is amazing how much time there is in a day when you lose your job and many of the social functions are off limits due to the behavior and actions of your child with autism.

Why is this the case exactly? How many parents actually feel the same?

Are they more concerned about how they will look in these social settings?

Have these parents allowed their egos to get in the way of their children enjoying more of life?

Or is there more to it?

Nothing is off-limits for us because I don’t think folks have enough chutzpah to give us funny looks if my son does something “unusual”.

Holistic lifestyle or not, I still have my military attitude, and I have ZERO tolerance for ignorance at any level!

And there’s no way, in this lifetime, I would ever stand for my family feeling ostracized because of autism??? That seems a bit absurd to me.

It’s not the message I want my son to receive.

Yet, it may be the very message these parents are conveying.  They could be inculcating their children with the ideas that there are certain places they simply cannot go… because of autism.

By keeping their children “away”, they could be missing out on several opportunities to raise awareness.

Here is one definition for autism that really chaps my butt,

2. a tendency to view life in terms of one’s own needs and desires.

Folks like Denis Leary have accused our community of being self-absorbed, and hate groups like this one do the same.

We cannot under any circumstance show through our actions that we do not want to be bothered with autism outside our “comfort zones”.

If there are other reasons like severe sensory issues that would explain why one would choose not to participate then I would understand.

However, declining invitations and limiting activities because a parent may not want to be bothered by the “looks” is a pill I can’t swallow.

If you’re a parent who chooses to steer clear of social gatherings, please enlighten me.

Do you decline because of sensory issues or do you decline because of the “looks”?

Someone shed some light on this one for me.

Autism: A Community Divided.

You have the warriors.

And then there’s the rest of us.

The warriors will, literally, stop at nothing to “fix” their children.

While the rest of us don’t view our children as being broken and in need of repair.

The warriors are very angry and are certain of the “cause” and “cure” for autism.

While the rest of us believe, and know, that there’s more to learn and discover about the “causes” and that there’s definitely not a “cure” for something still considered a mystery.

Like the nation, our community is extremely divided, and I do not know how we can come together.

The warriors don’t  understand those of us who don’t subject our children to rather intensive and extensive therapies just so we can have the “perfect” child.

No.  I don’t think they like us very much at all.

The warriors also don’t appreciate it if you don’t agree with them by claiming that vaccines are the “primary” cause of autism.

Is it Mercury?There is enormous controversy over whether or not mercury has played a role in the explosion of neurological disorders (NDs) amongst our children. We feel strongly that mercury has played a primary role in the ND epidemic, and that it’s removal from the bodies of our children is a key to recovery.

They actually send hate mail if you say it ain’t so.

Regardless of our differences, I believe we all love our children, and we all do what we feel is right for them.

In my opinion, there’s only wrong way to parent is that’s to not be a parent (4. a protector or guardian) at all.

In a blog post yesterday, the About Autism Guide, Lisa Jo, made an eloquent statement that only a loving parent to a child on the spectrum could make,

I’m determined to find my child’s strengths, and help him to build on them. … I’m determined to see my child as a person who can do many things – some of them very well indeed.

I am no warrior mom. I’d been a mom regardless if my child had autism or not. I’d stick up for him when needed no matter what as well. But I more accept his limitations and autism than to subject him to something that no where does it state for sure will help ‘this’ child.

A few weeks ago, I wrote a post titled, Waiting to Hear You’re Fired! It spoke of my involvement with Generation Rescue (and considering the fact that I’m still receiving angel email must mean they still considered me to be part of their armed platoon).

In a recent email, a mother made this statement that made my blood go cold.

I feel like every second he’s not diagnosed by a medical professional, I’m wasting time that I could be fixing him.

Look.  If a parent wants to utilize Gen R’s Action Plan then that’s their choice.  I just wish they would stop trying to “fix” their children.

If the rest of us don’t

…go beyond mainstream medicine to focus on the true cause and cure

Does this imply that we haven’t confronted

…the reality that doctors (us) trusted unwittingly failed (us) and that a government that (we) believed would protect (us) from unsafe drugs did not?

If we don’t

…experience feelings of anger, despair and (become) overwhelmed or question basic human decency

Does this mean we don’t care about our children?  That we don’t love them… as much?

Are we so deep in the dark that we don’t know

… what is true?

And choose not to believe that

In the end, the truth always prevails?

This community desperately needs to be healed.

The time is now for us to come together.

It’s time for the shields and armor to come down so we can become one.

Because if comments like these continue to be made, we will remain divided.

(6) Autismnewsbeat says:
“I’m determined to find my child’s strengths, and help him to build on them. … I’m determined to see my child as a person who can do many things – some of them very well indeed.”Bravo, Lisa! And how is this any different than how we would approach an NT child?

The “Warrior Mom” fad is a disingenuous bit of marketing piffle that translates into rejecting a child’s personality, the same way we are told to reject dry, flaky skin; or static cling; or calcium scale on our dishware. And worse yet, the Warrior Mom ethos is rooted not in empirical evidence, or the best advice of real medical experts, but rather the spoiled tantrums of a D-list actress who still thinks vaccines contain anti-freeze.

Health care fraud is an $80 billion a year racket, and the bad guys know about autism. Be skeptical. Given lack of a control group, and enough time, grape Jello® will look like an effective treatment for autism.

(7) Terry says:
There is no point in arguing positions of parents. One cannot decide what is best for another. However, Autism Newsbeat, what science are you talking about specifically? The medical community does not even agree that the rate of autism is actually rising and not better or alternative diagnosis. You have to have been living under a rock to believe this. Tell us ANB, what treatments are suggested? What therapies are proven? Do you have time to wait around? You are going to be waiting a long time. Maybe in another decade, a decision will be made that, in fact, the autism rate has risen. If you are happy with your child the way he or she is and when you are gone that he or she will be “just fine,” good for you. Do not be a fool however. Your so called, “science” always starts with a hypothesis and a guniea pig. Take for example, chelation. The study has been cancelled (its considered unethical). It is not unethical however to give a kid risperdal off-label (thats right it was being given by many docs to control behavior). It causes severe weight gain, tics and diabetes. But, it is now scientifcially “valid.” Follow the money. Vitamins have not been studied. Who is going to pay for the reasearch? Fish Oil? Same thing. CoQ10? Ditto. The mainstream medical docs have been using it for years! Ketogenic diet? It works. Modified atkins diet? It works. Studies? Very few. No money in it. Wake up people!

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