A Little Knowledge Is A Dangerous Thing…

A Little Knowledge Is A Dangerous Thing…

When my son was first diagnosed with Autism more than 3 years ago my wife and I were like so many other families before us – with little knowledge and a lot to learn.

We’d seen Rain Man but our experience with ASD (it’s a spectrum? What does that even mean?) was limited. What is PDD-NOS? How in the world do we get the IEP process started? What causes Autism (no it’s not vaccines!) ? How do we get services at home? How is Asperger’s different than “high-functioning” Autism? Is it Asperger’s or Aspergers  and so many more… Thank God for the internet (although don’t believe everything you read there).

I had this in mind as I embarked on my wear blue social media Autism awareness campaign this year. Every time I post a picture I’ve been trying to have an “Autism Fact: be the caption. For example today’s post included the caption: One third of people with autism also have epilepsy – along with the explanation of wearing blue and requite hashtags.

Believe it or not I do not have all of the facts memorized. I’ve been searching and pulling them from the internet which is littered with them. One particularly extensive and insightful one I found is on Kerry Magro’s website, which describes him as: “Kerry is a professional speaker who’s on the autism spectrum. He also hosts a Facebook page called “A Special Community” where he gives a platform to those impacted by a diagnosis to share their stories.” There I found this page, which I encourage you to read in its entirety and I’ve pasted some below:

68 Things To Know About Autism For World Autism Month

  1. To start… 70 million individuals worldwide have autism.
  1. Around 50% of individuals with autism wander from a safe environment, and over 50% go missing.
  1. Autism is the fastest-growing developmental disability in the United States.
  1. 1 in 42 boys are diagnosed with autism.
  1. 1 in 189 girls are diagnosed with autism.
  1. Over 3.5 million individuals in the United States have autism.
  1. Boys are nearly five times more likely than girls to have autism.
  1. Autism-related costs average $60,000 a year per family.
  1. 1/3 of individuals with autism also have epilepsy.
  1. Rain Man has the most Oscar wins of any autism-related film.
  1. Temple Grandin has the most Emmy wins of any autism-related film.
  1. April is World Autism Month
  1. The average age of diagnosis of autism is 4 years of age.
  1. Half of children identified with an Autism Spectrum Disorder have average or above-average intelligence.
  1. A child can be diagnosed with autism as early as 18 months.
  1. In 2007, the United Nations declared April 2nd as World Autism Awareness Day.
  1. For a long time people called April “Autism Awareness Month” or “National Autism Awareness Month.” More and more people each year though are now using either “Autism Acceptance Month” or “World Autism Month” to celebrate the month.
  1. As part of April 2nd, Autism Speaks started the global autism awareness initiative called Light It Up Blue.
  1. There is currently no medical test to detect autism or a cure.
  1. In 2014 the Autism CARES Act was passed in Congress giving 1.5 billion dollars of federal funding towards autism for the next 5 years.
  1. About 25 percent of individuals with autism are nonverbal.
  1. Currently, 40 states have autism insurance reform and counting.
  1. 30-50% of individuals with autism also have seizures.
  1. Dr. Leo Kanner was the first to describe autism in 1943.
  1. There are five types of autism-spectrum disorders: Pervasive Developmental Disorder- Not Otherwise Specified, Autism, Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.
  1. You can see the signs of autism in infants as young as six months.
  1. In 2012, only 0.55% of National Institutes of Health Funds Allocation (NIH) went directly to autism research ($169 million out of $30.86 billion)
  1. About 1% of the world population has autism.
  1. 35% of young adults (19-23) with autism have not had a job or received post graduate education after leaving high school.
  1. The Majority of adults with autism are unemployed or underemployed.
  1. 38. 1 in 5 Americans currently have a disability.
  1. Autism services cost U.S. citizens $236-262 billion annually.
  1. African-American and Hispanic children are diagnosed far later than Caucasian children.
  1. There is a wide spectrum of Autism-related disorders. If you’ve met one person with autism, you’ve met one person with autism.
  1. Some celebrities also have autism (i.e. Dan Aykroyd, Susan Boyle, Daryl Hannah, Temple Grandin, John Elder Robison, etc.).
  1. Autism is often labeled as a social and communication disorder, although some with the diagnosis may deal with other challenges such as sensory, cognitive and motor issues.
  1. The popular image of autism often falls with children. More than 80% of those currently on the spectrum are children.
  1. Drowning is the leading cause of death among children with autism.
  1. Suicidal thoughts are 10 times more likely in adults with autism than those without.
  1. Autism is a lifelong disorder. It doesn’t go away when you become an adult.
  1. Autism Speaks currently has 40 tool kits and counting to help better educate our community on everything from early intervention to adulthood. They are all available for free download here.
  1. Many people with autism have key interests that can be utilized by employers in the workplace. (i.e. just because you have a disability doesn’t mean you don’t have abilities)
  1. There is great literature available on autism today. Look Me in The Eye (by John Elder Robison) and The Reasons I Jump (by Naoki Higashida) for example, were two books on autism that made the NY Times Best-Seller List.
  1. Programs like Project Lifesaver and The Big Red Safety Tool Kit by The National Autism Association are helping to educate and provide resources for our community on the issue of wandering.
  1. Individuals with autism who need therapy should be seen on a case-by-case basis. Although some therapies are debated today some of the most universal therapies that are helping today are physical, occupational and speech therapy.
  1. Other therapies currently suggested to help individuals with autism include: Music therapy, Theatre therapy, Early Start Denver Model, Visual Schedules, Sensory Integration therapy, Applied Behavioral Analysis, Social Story Therapy, Pivotal Response Treatment, and Cognitive-Behavioral Therapy.
  1. Although therapies are pivotal for individuals with autism, other things such as a healthy diet and daily exercise are seen as ways to help them progress. In the past, a Gluten-Free diet has been seen as helpful.
  1. More than half of children with autism are bullied at some point in their lives and twice more compared to their peers who don’t have a disability (IAN).
  1. More than half of bullying is also stopped when a peer intervenes showing the importance of not only autism awareness but also autism acceptance.
  1. People with autism are more likely to be the victims of violence then committing a violent act.
  1. The majority of scholarships available for individuals with autism for post-secondary programs are for those with physical disabilities. Programs such as KFM Making a Difference are offering scholarships for those with autism to help change that conversation.
  1. An Individualized Education Plan (IEP) helps students with disabilities from Pre-K through High School get the services they need. If they get into a post-secondary program, they lose their IEP and instead have to advocate for their accommodations through Reasonable Accommodations.
  1. The Achieving a Better Life Experience Act (ABLE Act) that passed through Congress provides families with the opportunity to receive tax-free savings accounts for their loved ones to save up for when they are adults.
  1. Many individuals with autism are self-advocates in our community and have provided powerful quotes for our community. It’s important to remember individuals with autism sometimes see autism as a part of who they are. Dr. Temple Grandin, one of the most renowned autism advocates in the world says it best with her quote “Different not less.”
  1. As an autism advocate for the past eight years, I’ve traveled the world talking about disability-related issues. Some time ago I was certified as a national publicly accredited speaker from The National Speakers Association. At that time, I’ve been able to write two best-selling books on autism and work on five autism-related films. You can learn more about my background at www.kerrymagro.com
  1. Autism is reported to occur in all racial, ethnic and socioeconomic groups.
  1. Those with autism can feel empathy and love. Websites such as http://wrongplanet.net/help provide individuals with autism the chance to make friendships and relationships with one another online.
  1. Autism is NOT a disease.
  1. Autism has found a place in television today. Shows like NBC’s Parenthood (which is now available to watch on Netflix) have shown realistic portrayals of individuals with autism.
  1. Many sites today provide opportunities for guest submissions on autism-related topics. Our site for example allows guests post which you can read more about here.
  1. People on the autism spectrum are especially vulnerable to bullying. Nearly two-thirds of these individuals have been bullied.
  1. There is no relevant scientific studies that indicate bleach can be a cure for autism. Unfortunately, many non-scientific studies such as these put people with autism at risk.
  1. Autism is NOT caused by bad parenting/helicopter parenting.
  1. While many say early intervention is the key, we need to make sure we are also providing resources to adults with autism as well when it comes to housing, employment, post-secondary, etc..
  1. Peer mentoring can be helpful to those on the autism spectrum (in fact, for anyone).
  1. Bullying doesn’t stop when school ends and can be a lifelong issue for those with and without autism.
  1. There is no known scientific link currently between vaccines and autism.
  1. 1 in 68, individuals are currently diagnosed with autism in the United States.

Here’s hoping my efforts and those of so so so many others this month and every day help raise Autism Awareness and help spread the Facts – Just The Facts about Autism Spectrum Disorder. Thanks again for reading and please visit Kerry’s website to learn more.

 

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I Ask Not For A Lighter Burden, But For Broader Shoulders…

I Ask Not For A Lighter Burden, But For Broader Shoulders…

So I searched for waaaaaay too long trying to find something catchy to title this post – something to do with “support”. Then I came across this quote attributed to Atlas and / or a Jewish proverb:

“I Ask Not For A Lighter Burden, But For Broader Shoulders…”

Voila! As you may have read earlier my subtle way of supporting Autism Awareness month is wearing blue every day this April and posting pictures along with Autism facts on social media (Instagram and Twitter mostly). Along with wearing blue every day I wear my blue puzzle piece pin which often can be a point to open dialogue about Autism – when someone asks me why I wear it… That happened again today as luck would have it.

That said I’ve been thinking about other ways to try and support Autism Awareness for not only this month but all the time (as Autism is an every day thing – its not like it goes away May 1). In this epic quest I cam along this thoughtful post by Elizabeth Cassidy, a writer for The Mighty website, that I really liked and wanted to share:

I’ll summarize some of it below but feel free to click on the link to read it in full – in fact I recommend you do just that.

  1. Read books by autistic authors.
  2. Tell stories of autistic people (with their permission).
  3. Listen to autistic voices.
  4. Cast autistic actors.
  5. Read articles from autistic individuals.
  6. Hire autistic people if you own a business.
  7. Donate to autistic organizations.
    There are autistic organizations that are run by and for people on the spectrum. One organization is the Autistic Self Advocacy Network (ASAN), which advocates for the rights and equality of autistic people. The Autism Women’s Network works to get rid of stereotypes and misinformation about autism and promotes acceptance.

My personal favorites are the Asperger / Autism Network (AANE) and your local ARC chapter. I might point out this does not include Autism Speaks – if you need to know why  – please read these:

Thanks again for reading.

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Happy Third Anniversary!

Happy Third Anniversary!

What do you think of when you hear the word “anniversary”? Probably something romantic – a wedding, or day you and your significant other started dating etc.

There are of course many different types of anniversaries – some good and some bad.

Merriam Webster defines anniversary as: “the annual recurrence of a date marking a notable event – a wedding anniversary; broadly : a date that follows such an event by a specified period of time measured in units other than years – the 6-month anniversary of the accident”.

April 9 of every year is a very special anniversary in our house. It’s what I like to call Diagnosis Day.  Three years ago today my wife and I walked into the office of Dr. Sarah Barnett, a neuro-developmental pediatrician we’d been referred to by our own pediatrician. This was our second visit after meeting her 8 days earlier with August in tow for some testing and more. This time it was just the two of us and we’d be finding out what she thought. I wrote about the experience on the one year anniversary when I started this blog.

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August at the initial visit to Dr. Barnett’s office in 2015.

There’s part of me that can’t believe this was three years ago – in some ways it seems like it was much longer and another part of me remembers it like it was yesterday. Although we don’t see Dr. Barnett anymore and haven’t really since those first days and months we will forever be indebted to her. Her medical etc. abilities are only exceeded by the person herself. You could not meet a nicer doctor or person who cares about the children she helps. I can’t recommend her enough.

While some families may choose to not celebrate their diagnosis anniversary and instead look at it as a negative thing (I’d love to think that this doesn’t happen but I’m being realistic) I choose to celebrate it. My son and other kids on the spectrum are who they are. I choose to think that this is a part of that and deserves to be celebrated. Just keep in mind that I also clearly have a biased opinion as both a Dad and a self-diagnosed Aspie myself. Happy Anniversary!

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World Autism Awareness Day

Hello Again!

Yes  – I’m finally writhing again. So every year on April 2 we recognize World Autism Awareness Day – which just so happens to be today. Social Media and the regular media will be flooded with stories and images of people across the globe wearing blue and doing their part to try to raise awareness about Autism Spectrum Disorder or the various other monikers it goes by. I am no stranger to this and will also be actively taking part.

To that end I wanted to pass along these two thoughts.

That said I do it with a partly guilty conscience. One of the most well-known campaigns regarding this day (and April which is Autism Awareness Month) is the Light It Up Blue campaign made popular by Autism Speaks (one of the largest Autism organizations in the country). So you say “what’s the big deal’?

When my son was first diagnosed with ASD in April of 2014 it was one of the first places I went to look for information and more. For those of us with little exposure to Autism I would guess this is a common occurrence. In fact I realize that many people have only heard of Autism Speaks. But as time passed, I learned more about Autism (and Autism Speaks) and talked to more and more in the Autism community I found out all the reasons not to support Autism Speaks. If you are interested there are plenty of well-thought out explanations from those on the spectrum explaining why they dislike it,  including:

I won’t go into detail about what they consider is bad and why but needless to say I feel a little twinge of guilt because for the past 2 years I’ve not only worn blue on World Autism Awareness Day but for every day of Autism Awareness Month as my subtle way of trying to raise awareness. I also wear a little blue puzzle piece pin as part of that effort and post pictures on social media – mostly Instagram and Twitter. Please feel free to follow along.

Here’s the thing though – for those on the spectrum and their families – EVERYDAY IS AUTISM AWARENESS DAY. It’s not like Autism goes away at the end of April. To that end last year on May 1 I kept on wearing that little blue puzzle piece pin every day at work (though I stopped wearing blue every day). It’s not my idea alone as many write about how this one day is not enough. My hope every day is that someone will stop me to ask what the pin is for (it’s happened only a couple of times in the past year) and that will open up a dialogue for me to tell them about Autism. Keep your fingers crossed for me.

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I Guess This Means My Approval Ratings Are Down.

Children's note criticizing Dad and saying "dads are stupid".

Read it and weep.

Less than 2 weeks before Valentine’s Day I got this whopper of a “love note” from my 8-year-old son. Among the elegant pencil and lined paper design is such prose as “No Dads because they are stupid”.

As you might have guessed this display of affection was part of a meltdown. You see I told him that there was not enough time to go to Target before going to the Lego Store and have dinner with his best friend and other friends/Moms. He had to pick either or and I suggested we could go to Target the following day instead. —Boom!!!—- I know I’m clearly a heartless bastard.

In the middle of the ensuing meltdown – in full view of his younger brother and the ABA there for his therapy session – I found August hunched on the floor writing in a notebook and hiding under a blanket. Every time I walked passed him he hid what he was doing from me.

Eventually clearer heads prevailed – his and mine – and I can up with a potential third solution that seemed to soothe this savage beast – and although it didn’t workout in the end; any further crisis was averted.

Later while both boys were occupied I went looking for the note and found it rolled up in a cylinder shape and tape together so it could not be read. I of course cut the tape and read the note, took a picture and that was the end of it.

You see August has been having a tough time socially at school (sound familiar Autism parents?) so I already knew more was going on. Plus – he chose to vent his frustration this way rather than physically (as he has done in the past) towards both me and his brother. So I’ll take a “hate note” 100 times out of 100 in this scenario.

I’ve since had suggestions that I frame said note. Instead I’ve hidden it away and never plant o mention it or show it to him until his is much, much older; if at all.

The moral of the story: things are not always what they seem.

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Slow and Steady Wins The Race.

Slow and Steady Wins The Race.

The tortoise vs. the hare (Bugs Bunny in this case).We all know the story of the tortoise and the hare. These days that’s how I feel about August and his ABA therapy.

I read all sort of headlines online about this treatment and that discovery and its potential use for treating or curing Autism. Autism is not something to be cured but that’s a rant for another day. While its nice to fantasize about some new diet and the instantaneous effects it might have to make my son more “normal” (or at least it was when he was first diagnosed), there are no shortcuts in life and Life On the Autism Spectrum is no different.

There are many a day where I wonder how much good his therapy is doing… especially on those days when he’s still having meltdowns and saying some really horrible things to his parents. Then there are days where we see cracks of sunshine. It’s the little things. Like the day when he said “hello” to a family friend unprompted. Or the day he stood up for his younger brother when a friend was bullying him. Things that might go unnoticed on a regular day with a neurotypical child. Or the day he worked hard to cheer his brother up on his birthday – thinking of others and not just himself… If there’s one thing Autism has taught us is to celebrate the small things.

These minor victories can be attributed to his 3 months and counting of ABA Therapy and to our 2.5 years of Autism Awareness. Well that is unless some researcher somewhere has discovered a link between a steady diet of apples, watermelon and  Trader Joe’s maple leaf cookies as a “treatment” for Autism. So stay patient – slow and steady wins the race.

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Odds and Ends.

Things I’ve been reading and wanted to share by a particular author I came across on the Mighty blog/website:

I particularly like this passage from Autism Is Not the Problem:

It isn’t about finding a “cure.” Autistic people are not “flawed,” and they are not “broken.” It is about acceptance and embracing the fact that many people in our world just don’t do things according to the timetable society has set out for them. It is about seeing things from different angles, and learning from autistic people. Because they have so much to share and so much knowledge to broaden our minds with; if only we could stop trying to make them do it our way and attempt to see the world through their eyes.

Thanks for reading!