Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.
We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!
Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.
To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:
1. Autism Is Unaffordable
I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour - many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...
Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees... even in good times.
Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.
2. Parental Guilt
So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...
Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.
3. Puberty Plus Autism Can Be a Volatile Mix
Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.
A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."
The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.
Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.
4. Minority Children are Diagnosed with Autism Years Later Than Other Children
There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
That's why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I've visited black churches with this message letting them know they can be extremely helpful in this effort. We can't allow the window for "age-appropriate, effective therapy" to close on these kids.
5. Autism Can Be Tough on A Marriage
Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).
I want to shamelessly plug my former NFL QB's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that... a book like this might have offered me that insight earlier on.
Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.
6. Autism's Effect on Siblings
We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma... the list goes on.
It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.
I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.
7. Adults Living with Autism
The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.
Here are a few sobering facts:
•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.
We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!
How glorious would it be to get more media attention on this particular issue.
And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.
8. Autism Advocates Who Actually Have Autism:
What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that...
I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.
Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.
My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!
I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.
Bottom line: Their opinions should be heard, valued and included.
So here's to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!
Holly Robinson Peete
Actress, Author, Proud Mom of Four
Todd Drezner: Learning to Embrace Autism
Chantal Sicile-Kira: HBO: A Mother's Courage: Talking Back to Autism
Amanda Copeland: Captain O Captain, Autism is Calling
Elaine Hall: Lucky with Autism?
Holly Robinson Peete: Autism Recovery: Pediatricians Coming Along ...
Squidalicious: Holly Robinson Peete: Autism Style, Towards Clarity ...
Holly Robinson Peete: Autism “destroys Families” at The Insider
Jamie
Thanks,
S.Linton
AutismClassroom.com
Thanks,
S.Linton
-AutismClassroom.com
wonderful article .. many things that needed to be said .. thank you so much for saying them. It always stuns me how little has changed in the couple of decades my family has been dealing with these issues.
Kelly Priest, M.S.
Los Angeles Social Thinking, LLC
Ignoring KNOW causes of autism (too many vaccines, too many heavy metals in vaccines/environment): bad
There should be enough media ink to cover all sides. Sheldon, promise me you will read w/ an open mind, ANIMAL studies of what happens when they are put on the equivalent of infant vaccine CDC rec. schedule. It is sad, an outrage and could quickly save SO MANY, if they'd just ADJUST the goddamn schedule already.
be gentle w/ yourself mofmars333...I couldn't help myself either, thought the 8 issues she brings up are very impt too.
http://articles.mercola.com/sites/articles/archive/2010/03/20/david-ayoub-interview-february-2010.aspx
Thank goodness doctors are coming forwad speaking out as Dr. Mercola does.
Many work hard in these blogs for special interest groups & to discredit those like Dr. Mercola because it cuts into the profits of those they work for.
They don't like you receive his free news letters & become educated in matters of importance that could save the lives of your children, family memmbers & friends you love.
Vaccination began as something good & went bad along the way due to greed & too many looking the other way.
Errors must be admitted & corrected. Time to clean house & get back to the original purpose that actually had the well being of our people at heart.
Keep this interview in mind & facts like vaccinations contain traces of mercury & aluminum as you watch this eye opening experiment that gives one the idea of the "point" being made.
Brains, especially babies, are fragile & sensitive matter.
Who's to say how little wouldn't do the same harm in synergy to different degrees, in different children, similar to the extreme reaction in this clip?
http://www.youtube.com/watch?v=Z7Ilxsu-JlY
I couldn't concentrate enough to decide what to send & began crying, instead, due to the helpless feeling of knowing many children remain in harms way.
Too many oppose truth with lies of deception, like they do in these blogs but there's a lot we can do to help our people.
Look up media email addresses. Hold them accountable in giving us all facts, on this & every other matter of importance that comes up. Use your voice to cover all the dishonest ones out there & demand fair reporting.
Sign up for newsletters like Dr. Mercola's, in the above link, to keep informed.
Above all, do your own research. They're counting on your not doing so & hope enough stay duped in order to continue the scam, just to keep that almighty dollar.
Do a search on "truth about vaccinations" & "truth about amalgam fillings"
It's all there in many pages of articles to study.
Watch for sites of the deception like "Quackwatch" who have been exposed & discredited. Look them up & see for yourself, too.
Harriet Hall, MD Back Pedals to Get Out of Debate Concerning "Vaccination Scam and Cover Up"
Dr. Hall reneged on debate she had committed to, resulting from two open letters to her and sent to media.
March 19, 2010 - There's been media black out against witnesses & parents of autistic children due to criminally orchestrated efforts to prevent fair debate.
The HHS is complicit due to the message that initiated said blackout, which was delivered by secretary, Kathleen Sebelius & authorized by the president of that office.
Debates will happen and are already in the making. This press release is, in part, to put media on notice that, "We The People" demand equal time along with fair and balanced reporting.
The public is requested to view both open letters written by activist, Marsha McClelland, by going to Dr. Hall's current article "Vaccine refusal: Irrational and immoral"
http://www.pnwlocalnews.com/south_king/aub/lifestyle/87378812.html
Scan the comment section for Mofmars333 where you'll find them both and witness follow up.
Marsha McClelland
330 926-1679
Founder of "We The People United" groups & forums
http://groups.yahoo.com/group/WETHEPEOPLE_UNITED/
Umbrella group for owners of all important issues to our people, celebrating our 7th year in activism.
My interest is in opposing the nonsensical view that vaccines cause autism. But since that wasn't being discussed here, I stayed out of it. Certainly, it should be possible to have a discussion of autism without bringing this up.
But time4truthnow does not have a sense of what is fitting and what is not. I am not surprised to see that Harriet Hall might back out of a debate on vaccines and vaccination. The general consensus from the rational side of several questions is that there is no value to debating these issues
Get real, Sheldon & leave us alone with all the deception for once as it was you that pointed out the nature of this thread, yourself.
The topics you're shedding light on are precisely the ones that are always on the minds of the people I work with as a provider of Social Thinking groups, parent support groups and groups for adults with social cognitive challenges. And they are the concerns that absorb me, as the mother of a child with autism and a child without.
If you love someone with autism spectrum disorder, please get involved. There are organizations that are fighting for us (Autism Society of America, Autism Speaks, state autism societies). Without our voices, change will come slowly.
The only thing I wish was different in this article was when Peete refers to autism as being a mental health issue. Autism is a neurologocal disorder with a physiological cause and effect.
Thank you so much for bringing out in the open an issue which is going to affect us all greatly in the near future, where will my child go, as he or she becomes an adult. Our children should be able to look forward to a future that will allow them to continue to grow and reach their fullest potential. The big question here is also, "What will happen when I am no longer here to care for my child."
With these major issues in mind, I began an organization called, 'Golden Heart Ranch." We are dedicated to changing the expectations and future for special needs kids, by building a community the likes of which has never been seen in California before.
We intend to create a forty acre ranch, complete with a bakery, coffee house, gardens, equestrian therapy and much more. The ranch will provide jobs, permanent living in family style homes, community, and friendships all in an emotionally and physically safe environment. Our special heroes should have the opportunity to live a quality, dignified and fun:) life. www.goldenheartranch.org Thank you for your continued support to our children.
NIH Symptom Remission in Autism. The National Institute of Mental Health is conducting a research study of children and adolescents ages 8-17 who, since being diagnosed with autism, have improved so much that they no longer meet criteria for autism. Children ages 8-17 who continue to meet criteria for autism and typically developing children may be eligible as well. This is an outpatient and inpatient study at the NIH Clinical Center in Bethesda, MD. Transportation and lodging reimbursement may be available. The study is free and participants will be compensated for their participation. Please call 301-435-6205 (TTY 1-866-411-1010) or email AutismOutcomeStudy@mail.nih.gov National Institute of Mental Health, National Institutes of Health, U.S. Dept. of Health and Human Services.
Holly, I am so pleased to see attention to the issues that arise during puberty. I am director of an autism center and one of the areas I specialize in is puberty and adolescence, and healthy sexuality development. I am an Organization for Autism Research funded researcher in the area of sexuality and ASDs, and the author of Girls Growing Up on the Autism Spectrum - which is all about puberty and adolescence. This is such an important time for all youth, and it is even more challenging when you face social and communicative difficulties.
Thank you for highlighting what has been overlooked for far too long!
Shana Nichols, PhD
Clinical Director, Fay J. Lindner Center for Autism, ASPIRE Center for Learning and Development