Where Is All The Autism Awareness?

This is a new story, yet the theme is nothing short of disgustingly familiar. Another autistic child being kicked out, this time from an airplane. We've seen this play out time and time again, with children being booted from school, church, the movies, and Boy Scouts. Where is all the Autism Awareness?

Here we are, trying to live our lives with our children. And all too often, the treatment we receive from those in society ranges from rude to cruel. The stares, snickers, and whispers are one thing. But lately, it seems the job of parenting an autistic child and that of simply being an autistic person has become increasingly more difficult. The message that we, and our children, are an inconvenience and need not be tolerated is becoming quite clear. There was a time when it was thought community was where you turned to when you needed assistance. The idea of reaching out--whether to your church, your school, or other community groups, seems more difficult for autistics each day.

Now, I will say, I look at things on both sides. In fact, prior to my experiences with my youngest, I may have agreed with the airline's position. I may have believed that kicking this mother and child off the flight was the only option. And to any who feel this way, I say walk a mile in our shoes. I have seen time and time again, the intolerance toward autistic people, and people with disabilities in general, is shameful. I am not surprised that this flight crew was forceful and abrupt, and that they did not attempt to work with this mom and her son. It was only a few weeks ago, that AutismVox wrote about an incident in the security line with her son. What more is needed, for society to become tolerant of our children? The sad truth is, most would prefer we keep our kids away.

With all this "autism awareness" everywhere, I ask you this: where is all the understanding? Does it matter that someone knows what autism is, or the figures 1 in 150, or that Jenny McCarthy "recovered" her son? No, obviously it doesn't. It's gotten us nowhere. Proper care is still very limited, we are still lacking in options for teen and adult autistics, services are frustratingly limited. Autistic children and adults are being abused and killed, as I wrote about recently. Autistic individuals, and their families, are discriminated against. All of the money raised in the name of "autism awareness," all the signs at Toys R Us, the pretzels, the CNN coverage...and where has that gotten any of us?

Here We Go Again: Autistic Boy Kicked Off Of Flight

I have to tip my hat to society--if it weren't for its' continued intolerance of autistics, we'd never hear "autism" uttered so frequently by every news agency in this country. The last several weeks have brought on a barrage of stories about autistic individuals. Some have been more positive, sadly, most have been about autistic children being excluded (or much worse).

On Monday, two and half year old Jarett Farrell and his mother were on an American Eagle flight, on their way to visit family in New Jersey. Jarett, who is autistic, was having a tough time and was upset. It it should also be pointed out--many young children have difficulty on an airplane.

His mother says she was doing all she could to calm the autistic boy, but got no sympathy from the flight crew.

"If they just would have been a little more understanding I think that none of this would have been a problem," Mother, Janice Farrell said.

Instead, it only got worse:

"She kept coming over and tugging his seatbelt to make it tighter, 'This has to stay tight'. And then he was wiggling around and trying to get out of his seatbelt. And she kept coming over and reprimanding him and yelling at him," Farrell said.

One of the pilots came back to the cabin with a stern warning and Farrell says the frustration level escalated.

The pilot turned the plane around, and the mom and child were "escorted" off the flight. And, just to ensure no one would be confused about what was going on:

"The pilot made an announcement that there was a woman and her child on the plane and the child is uncontrollable. And at that point I just broke down," Farrell said.

We are taking a family vacation this summer. After much discussion, we decided to travel by car. This decision will take much longer, be more costly, and we still are not certain how either of our children will handle it. However, when we thought about flying, and the many delays and cancellations my husband has faced, it seemed we were better off driving. We'd also heard of at least one other child whose flight made an emergency landing, because she was crying. Friends of ours recently had an experience where a flight attendant placed her hands down on their son's (who is not yet 3) legs, trying to force him to sit in his seat (they were about to land, and he wanted to sit in his mother's lap). Other passengers were outraged, and made complaints over this crew member's behavior.

We thought long and hard about our daughter, at the airport, on the plane, and so on. What if our flight was delayed? How would she handle long security lines (this story in particular was concerning)? What if we were stuck on the tarmac? What would happen if she had a meltdown mid-air? All of those questions and concerns made us lean toward driving.

Yes, our decision to drive (which we made almost 2 months ago) was our own. I feel better knowing we will be in our familiar car, and not have to deal with strangers and others who may interfere or do otherwise should our child have a meltdown. Knowing how the airline companies have handled other situations, I was honestly anxious thinking of flying with my daughter.

I have to wonder though--if society (including airline crews and airport staff) was more tolerant and these stories weren't so common, would I still feel the same?

High Functioning? Then Shut Up!

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.

Oh, but wait...but they do need you. Sometimes, at least.

A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.



I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

Accomodations vs. Exclusion

Sharon left a comment on this earlier post. This is her reply:

It's a double edge sword. It's great that AMC is accommodating.

But it sucks that we have to go to a "special" time because most people don't understand and are not willing to accept.

I think what she says is so true. I was hesitant to comment that my initial reaction about these "special move showings" was very mixed. I too think it's nice when businesses (as well as schools!) make accommodations, and this is no exception. There is a theater about 40 minutes away who also offers such showings. We've never gone, because of the drive. Also, for now, the 2-3 times per year we go to the movies, things have gone fine. I was startled reading this article, as my child has gotten up and danced around, jumped, scooted up and down the steps. So far, and I guess we are lucky, no one has complained. We try to go to shows that are less crowded, prepare my daughter ahead of time, and always have an aisle seat.

I suppose if my child were kicked out of a movie, I would drive the extra distance to the special showing. However, at the same time, I think I would take extreme issue with the theater. I would certainly let my views heard, to say the least. I have been in the movie with a baby crying (and not just for a second, I mean repeated crying, and this was in an R-rated movie). We all see the obvious "turn off your cell phones!" messages on the big screen--and yet, phones ringing is still an issue. Plenty of adults are annoying in the theater--critiquing each part or just talking aloud. In every children's movie I have gone to see, there's always been at least a couple of children speaking or whispering, laughing louder and longer, etc. The point is--whatever movie you are seeing, chances are there will be some distraction. You are in public, people. What do you expect?

It would be nice if the public wouldn't simply point at our children and say their behavior is unacceptable. It's a double-standard. If you truly cannot sit in a public theater and put up with some noise or distraction, then I suggest you stay home and rent a movie. The same goes for you if you are at a family restaurant (I'm talking about say Chili's, Friday's, etc. not Tavern On the Green!) and a child is "annoying" you. Stay home! If you go out into public, you must be tolerant of others, plain and simple.

One the flip side of that, I do appreciate special accommodations. My child happens to do fairly well in theaters, but I can see the benefit of lower sound, altered lighting, and no trailers. I can see this as being the only way for some families to attend the movies together. There is something to be said about being in a comfortable environment, where everyone understands your child. I know that when we get together with families from my daughter's special ed class, it seems to be an easier, more relaxed time. None of us need to explain or feel judged if our child behaves a certain way. No one stares if our child stims or has a meltdown. We've all "been there, done that." It is so nice to be with a group that you can relate to, and who relates to you. It feels safe, and I suspect our children feel the same way.

It would be nice if our children would all be accepted, and society would be more tolerant. I think, as messages like this come into the mainstream, we will get closer to that. For now, it seems like a nearly unattainable Utopia, and as such, our only option may be separate programs (in some cases) for our children. I do push strongly for inclusion, no doubt. But, I do see a place for special accommodations--even if that may mean exclusion some of the time.