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Radio Coverage

29 Aug

Yesterday something amazing happened. My blog was featured on a popular Los Angeles / Orange County radio station, The Fish 95.9.


I couldn’t help but cry as I heard my post read over the air waves.

My little brother, my inspiration…he mattered to somebody. My story, my experience…it mattered to somebody.

Dylan’s life is touching so many others.

I’m so humbled, and so honored, that The Fish shared my story on their incredible platform. It’s a great feeling of validation and support. What an amazing gift. I am so thankful.

To hear the broadcast, click here.

Search Engine Saga Continues…

10 Jul

You may recall my post about Googling autism and the horrific things that popped up. I then did a follow up, sharing Google’s response as well as my findings on other popular search engines.

I decided to re-examine search engine suggestions and here is what I found today… (click to enlarge)


On the whole… the results look pretty similar to the way they did 3 months ago. Some things have changed…slightly…like some of the #1 suggestions being positive rather than negative. But there is certainly still work to be done, as at least half of the searches still propose murder. I get that some people will always think those with autism are “annoying” or “rude”. And as much as I wish that wasn’t the case…I know that ignorance and entitlement to opions are going to exist. But, death wishes are unacceptable. This kind of hatred needs to end. Any response, Google??

Prom Night

30 Apr

This story has been going around Facebook and I wanted to share it… (click to enlarge)


This picture has gone viral with thousands of “likes” and hundreds of thousands of “shares”. I think what people love about it is that it serves as a reminder that there are kind, loving people out there. There are people who want to bridge the social gaps between typical kids and their special needs peers. There are people who see beyond diagnoses and disabilities. There are people who love, unconditionally.

Good for that school for having a club to bring peers together. It’s clearly making an impact.

I only wish this dad would post a follow up letting us know how Jon felt about going to Prom 🙂

1 in 50

21 Mar

Yep, you heard right. The CDC announced yesterday it’s new findings that show 1 in 50 school-age children have autism.

Naturally, articles instantly popped up about how this doesn’t really mean anything, the numbers are the same as they’ve always been. We’re just more “aware”. This article was my favorite: (<— sarcasm)

“You will probably see a lot of headlines about the 1 in 50. Some organizations might even try to use those numbers to scare people, to talk about an “epidemic” or a “tsunami.” But if you look at the numbers and the report itself, you’ll see that overall, the numbers of people born with autism aren’t necessarily increasing dramatically. It’s just that we’re getting better and better at counting them.”-

“We’re betting better and better at counting them”…??? Seriously!?

Are we as a society more “aware”. Of course. Are there probably some percentage of kids who are misdiagnosed and don’t actually have autism? Sure, the same is true of ANY diagnosis. But does that account for the ever-increasing autistic population? ABSOLUTELY NOT!

People LOVE to deny an increase and tell us we’re overreacting to these numbers. If the numbers aren’t increasing…prove it. Show me 1 in 50 sixty-year-old adults with autism.  You can’t! Because they don’t exist!

THAT is the research I’d love to see. If people are so sure that we’re just getting better at recognizing autism, then let’s look at the adults around us and see how many of them currently qualify for an autism diagnosis. How many ADULTS (ages 30, 40, 50, 60+) have autism? Let’s compare those numbers to the numbers we see today.

And for those parents out there who say they agree with this Forbes article, and don’t think there’s a real increase in autism…ask yourself these 2 simple questions:

How many autistic kids do I know?  How many autistic adults (ages 30+) do I know?

Search Engine Nightmare- Part 2

3 Mar

After posting on Friday about the terrible issue with Googling about autism, an old high-school friend of mine who works for Google got in touch with me. He sent my blog to a co-worker in charge of the search predictions, who had this response:

“We are aware of the problem, and as you rightly noted, these predictions violate our policies on hate speech. We have a bug open to get rid of them – a solution should be live soon. Feel free to tell your friend that we’re aware of the problem and working to fix it.”

My friend went on to tell me,

“We (at Google) don’t like seeing this stuff any more than you do, and we wish it was easier to keep it off the site. It’s just a constant losing battle so things will always slip through. I’d be happy to continue championing the autism cleanup for you, though.”

So, I’d say that sounds pretty good. They know it’s happening. They agree it’s wrong. They’re going to fix it. And, I’ve been personally assured that at least 1 person out there at Google will fight this fight alongside the rest of us. I believe the only thing left to do (after fixing it of course) is for Google to publicly acknowledge what happened, and how they feel about it. I know the autism community would appreciate the support. I look forward to progress being made here.

In other news…I decided to try my luck with 2 of the other largest search engine sites. Here’s what I found on Yahoo!:


Besides the shocking “demon possessed” suggestion, and a couple of other hurtful results, the rest were FAR less violent  than what I found on Google. Then, I was impressed when I saw these:


It appears Yahoo! has put something into place to block any suggestions from coming up when you search “need” or “should” in relation to autistic people. Good for them! And I was pleased to see the positive choices that come up when searching about autistic people. So besides a few that still slipped through (which I hope Yahoo! will address and delete), Yahoo! offered significantly more positive options, and significantly less hateful ones.

Next, I tried Bing. Here’s what I found:


Ugh. Several suggestions of death, danger, and evil. Not good!!


Okay…now we’re getting somewhere. Still mixed results, but at least I’m seeing some positive ideas like “smart” and “superior souls”…


Ah-hah….just like Yahoo!  it appears Bing has blocked any results from popping up for a couple of those phrases. Good effort! Unfortunately, although they’ve safe-guarded “autistic kids should”, searching “autistic people should” still resulted in a death suggestion. So, they’ve still got work to do! Bing certainly needs to clean up some of the suggestions they offer up regarding autism.

Overall, Yahoo! seemed to offer the least damaging results when searching about autism. In comparison to Google, their results were significantly less inflammatory. Google remains the most saturated with hateful suggestions. And Bing seems to be in the middle, offering both very negative and some positive results.

My take-away- The fact that these search engines are displaying disturbing content in regards to autism boils down to the simple fact that THOSE are the most common searches conducted. The search engines need to take responsibility for what they are allowing on their websites, and should be actively working to eliminate the hatred they are promoting. But the bigger picture is not about a website that automatically offers popular searches…. it’s that the most popular searches about autism are hateful, violent, and just plain evil. It’s that the world at large still has dangerous attitudes and beliefs about people with ASD.

I cannot wrap my head around what would possess someone to sit at their computer and type that any people group should “die” or “be killed”.  I’m baffled at why ANYONE would say those things, much less why A TON of people would say those things.

It’s depressing that with all the knowledge out there that people are still so uninformed and so aggressive towards people with autism. How could people out there think these horrible things about people like my little brother? I don’t understand.

All I can hope is that once these search engines have fully erased all the hateful suggestions, people will start seeing positive things pop-up about autism. And, maybe…just maybe…that exposure will change people’s minds. Beyond that, we in the autism community can continue to do our best to promote acceptance and understanding, letting our patience and love be an example to others.

We live in such a sad and broken world….

Search Engine Nightmare

1 Mar

Some of you may have already heard about this…

I read an article today stating that Google’s “auto-complete” feature (which gives you suggestions as you type to help finish your sentences, based on the most popular searches) is working to get rid of hateful suggestions for autism related searches. Apparently when Googling about autism, some horrible things would come up. I had no idea. The article I saw said Google would fix this issue. Phew! But, I decided to Google various autism related word combinations and see what suggestions would appear….Just in case….

And unfortunately, I can say with 100% certainty, that Google has NOT resolved this issue yet. This is what I found when I searched…

***Disclaimer*** Please be advised: The language and suggestions below are disgusting.



And just when I thought it couldn’t get worse…




So… who’s to blame? Google??? Well… partially. There are certain phrases that just shouldn’t pop up when you’re searching something. They should take responsibility for what they are actually “suggesting” that people search. But how do they even come up with these suggestions? They’re based on the most popular searches! So who else is to blame?? Whoever is searching these phrases!

Is this real? Do people really type these things into their browsers? Who is searching these things? What are they trying to find online by typing these things? I don’t understand.

But, I guarantee that these “suggestions” popping up when people are searching OTHER autism related phrases is only helping to perpetuate the myths and fears and misconceptions. Heck, if I Googled a disorder I knew nothing about and the first things that came up were “violent”, “evil”, “dangerous”, “retarded”, “rude” and “should die”…I’d be freaked out!!! I’d be pretty afraid and I’d want to keep my distance!

So…my guess is, by Google offering up these choices for people to select from when they’re typing about autism, people end up clicking on those options, even if that’s not what they intended to search for originally. Therein lie the issue. People clicking on these suggestions (because they’re what pops up) likely contributes to making those phrases the “most searched”. Thus, they keep showing up as suggestions. It’s a terrible cycle!

So…short of every person who is outraged by this Googling POSITIVE autism related phrases in an attempt to make those the most searched terms… what can be done?

Miss America

10 Jan


Alexis Wineman is 18 years old, and will be competing in Saturday’s Miss America pageant, representing her home state of Montana. She’s not only the youngest contestant, but also the first ever autistic contestant.

She is a beautiful young lady, and she has set out to do amazing things. She is already involved with several autism related organizations, speaks at various conventions, and her platform “ Normal is Just a Dryer Setting: Living with Autism” centers on building autism awareness and acceptance.

As she said, “Being on the spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason.”

Amen sister! I feel the same way, even being on the other side of the coin. I’ve always known my brother’s autism diagnosis was for a reason.

So, count me in as one of the millions of Miss Montana supporters. This girl is going to do great things, and already has.

Way to go Alexis!!

And, don’t forget to tune into the Miss America pageant Saturday January 12, at 9 PM EST.

Links to her story:

Siblings- Part 2

12 Dec

I saw an article online today entitled, “Autism’s Invisible Victims: The Siblings,” by Barbara Cain.

You can read the full article here.

This is the last paragraph, and I thought it summed things up very nicely:

“Autism isn’t just a health crisis; it’s a family crisis that impacts all members. Sometimes the impact on siblings can be positive. Aware of their comparative good fortune, these siblings were inclined toward sacrifice and mature beyond their years. Most were prepared to assume full responsibility for adult siblings in later years, and many enter an array of helping professions. But until we recognize autism’s collateral effects and attend to the special needs of the whole family, we will not really be grappling with the far-reaching but deeply felt impact of this disorder.

What I love about that last paragraph is how it mentions some good things that come from having an autistic sibling, while not negating the potentially ‘bad’ things that come with it.

I appreciate the writer’s attempt to enlighten families about the unseen impact of autism on the siblings. Often,  the deep effects go unnoticed. Sure, most parents are aware that sometimes siblings feel neglected or forgotten. Most parents have heard that kids can be jealous of autistic siblings sometimes. But do most parents know that siblings might feel pressured to grow up, to take on responsibilities they weren’t ready for? Do most parents know some siblings may have social stressors revolving around peers making fun of their autistic sibling, or the fact that they may not want friends coming over for fear of their sibling embarrassing them, or that they may have a hard time relating to friends because their life is so drenched in all things autism? There are a million and one ways autism might effect a sibling. So what I think the author was trying to say, and what I would like to echo, is that you just don’t know all the ways autism might be effecting your other children. You might find autism to be a huge blessing and a wonderful thing that should be celebrated, not lamented. But it doesn’t mean your other children feel that way. Be aware. Be alert. Be attentive. And never, ever, overlook or deny a sibling’s experience. And, like the article said, some great things just might sprout from your child having an autistic sibling.

The Spectrum

5 Nov

New York Magazine published a rather lengthy article recently about the overuse, and misuse, of Aspergers and Autism Spectrum diagnoses. You can read the full article here.

It asserted, “this is not a story about Asperger’s, autism, or the spectrum—those very real afflictions that can bring untold hardship to the people who suffer from them and to their families. It is, instead, a story about “Asperger’s,” “autism,” and “the spectrum”—our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.”

The piece discussed how “aspergers” has become everyday language, “sloppy vernacular”, and is no longer true to it’s origins. It has morphed into a catch-all; everything from a slur to an identity.  It’s a card quickly pulled to describe people who don’t fit into our own box.

A psychiatric diagnosis first observed in four boys more than half a century ago has become common slang, a conceptual gadget for processing the modern world. Weirder still: At the same time it soothes the insecurities of those who would weaponize it as insult, it flatters the vanity of those who’d appropriate it as status credential.”

I notice the rampant overuse of “aspergers” and “on the spectrum” all the time.  Some people are always on the lookout for odd people they can hastily label off the cuff. That kid doesn’t pick up on when people are annoyed by him? Aspergers! That person is obsessed with that thing? On the spectrum!

It really bothers me when people throw out fake diagnoses like candy on Halloween.

First-  I can’t stand the overuse of diagnoses as slang because it completely overlooks a main criteria for diagnosis. In order to be diagnosed with something, the DSM-IV is clear that the symptoms must interfere with the person’s life in some way. Just because you have symptoms of something does not automatically give you a diagnosis!!! Your functioning MUST be inhibited by the symptoms in some significant way in order to warrant a diagnosis.

(ie: DSM-IV criteria for Aspergers:  “C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.”)

So what if a kid is aversive to certain sounds? So what if he prefers things lined up or grouped by color? Who cares if he rocks back and forth a little? Unless those things prohibit  him from forming relationships, learning, communicating, etc. it’s NOT diagnosable!

All human beings have weird little things about them. Every single person on this planet. Instead of pathologizing every nuance, let’s be real and recognize all people have quirks.

For me, I avoid touching jeans with my fingers. Wearing them is just fine…but I can’t stand how the fabric feels on my hands. And #2 pencils!! Oh my gosh. I strongly prefer mechanical pencils. I just hate the sound and feel of the lead from writing with #2 pencils. And my stims: I crack my bones constantly (even at the expense of  husband’s sanity). My neck, back, fingers, wrist, ankles, and even toes. I have to crack them all dozens of times a day! I also play with my own hair when I’m upset. It soothes me. I light candles that smell good. I play my favorite songs on repeat sometimes. I shake my foot when I’m sitting. I do lots of little things that make me feel good.

We ALL have oddities and self-stimulatory behaviors. That doesn’t mean we all have autism or aspergers! Which brings me to my next point….

Secondly, it upsets me that people diminish a true diagnosis, and all that goes along with it, by slapping a quick label on people. Not to sound all doom and gloom and rant about how miserable autism is…but it ain’t a walk in the park!! There is hardship and heartache and worry and fear and pain and a million other things that surround a diagnosis. Calling some quirky kid “clearly aspergers” or “totally on the spectrum” negates what autism really is. Yes, autism is on a spectrum and plenty of kids are considered ‘high functioning’ and face less day to day struggle than others. But there are plenty who genuinely suffer with autism. Again, not all experience autism the same. But, I just don’t believe autism is purely some wonderful, magical gift we should all happily embrace. Embrace the child and his or her strengths and personality and traits, of course! But discredit how gut-wrenching autism is for many families…. I would never.

And last, I feel the need to make clear that I do not think people should belittle the validity of  a diagnosis because “that person seems so normal!” or because “we all have stims!”  My declaration that we are all a little odd is in NO WAY a negation of autism and aspergers diagnoses. They are real conditions, with real struggles. And just because we all have little quirks does not mean we are all autistic or aspergers. My wish is simply that people would carefully consider their loaded words before tossing them out.

EDIT: I also feel the need to add that I DO NOT believe WHATSOEVER that the dramatic increase in prevalence of ASD is due to “better diagnostics” or “more awareness”. I actually find that to be a big crock of…. Well, anyways…. Just thought it was worth noting that although I DO see people flippantly tossing out diagnoses in conversation….I do NOT relate that AT ALL to the real increase in real diagnoses. Those are 2 separate things.


23 Sep

Last week an autistic boy was handcuffed after allegedly getting out of his seat harness and biting several people on the school bus. You can read the full story here.

The mom says “[they] should have treated my son differently. They should know how to handle autistic kids.”

The school spokesperson says the bus driver and aide “followed protocol” by calling police when they weren’t able to calm the child down.


I may catch some flack for what I’m about to say…but I’m going to say it….

Whether or not a person has autism has no bearing on the acceptability of aggression or violent behavior. None.

Might there be an alternative to using handcuffs? I don’t know. Maybe… I have no idea. But the point of putting someone in handcuffs is to reduce the risk of the person hurting themselves or others. In this case, it was not a punitive response. It was a safety response. And to expect the community to “know how to handle autistic kids” is preposterous. I get that in this case, the bus driver and aide probably have had training in dealing with autism. But I’ve had lots of training, too. And sometimes children still get aggressive! So expecting people at large to know what to do in these cases is outrageous. As much as I’d love a world where people had tons of knowledge and experience and understanding of autism…they don’t; I can’t expect them to. And I certainly, can’t and won’t, expect the world to pardon violent or harmful behavior because a person is autistic. Yes, it’s important to spread awareness; I fully support that cause! But the reality is that the world does not revolve around autism. I’d be really curious to know what this mom suggests the people involved should have done instead. In my coursework training to become a Board Certified Behavior Analyst (BCBA) we were taught that if a person’s behavior endangers themselves or others and they are not able to be calmed or controlled, we should call the police. Now, whatever led up to the aggression in this case…maybe the staff could have done those things differently. Or maybe they did everything exactly right! Who knows! But regardless of the antecedent…if the response is aggression that threatens other people’s safety, stopping the behavior and protecting people is really all that matters in that moment.

And, ultimately, this story reminds me why working on these behaviors while children are young (and small) is SO, SO, SO important. I am in NO way suggesting the mom in this article isn’t doing what she can to manage her son’s behaviors, or that parents of aggressive autistic children are at failing to do something. My own brother can become aggressive sometimes. And one of my biggest concerns has always been how people will handle these behaviors when he gets bigger. He will probably outgrow my mom in less than 5 years. So it’s imperitive to get it under control now. And I really encourage other parents to look ahead when dealing with aggressive behaviors. If it’s hard now, it will be exponentially harder down the road. Please don’t bury your head in the sand. I know it’s painful. I know it’s hard. I know it’s draining. I know it’s scary. And, I know it seems easier to just give in sometimes to make it stop. But not addressing it now will make your own life (and theirs) so much more difficult down the road. I implore you to hold the long-term picture in your head at all times. Sooner than we know, autistic kids will be autistic teens, and autistic adults. And the community around us will have even less tolerance for unsafe behavior. So the best thing people can do in the here and now, is never lose sight of the bigger picture. Our vision for the future can be our compass for the present.

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