Sunday, April 29, 2012

Stop the Judge Rotenberg Center

Greg Miller asks that we get two people to sign the petition. Keep passing the link on--it was at 28 signatures last night and this morning it is at 178. We see petitions all the time, I know. But if there's really outrage in our autism community and in the wider community over the disabled being tortured with painful skin shocks, here's your chance to prove it. Make the number of signatures grow. If you've got a blog, write a post. Show your outrage. Make sure that anytime someone googles the JRC, what they see first is hundreds of people's blog posts speaking out against the JRC's methods.

Gregory Miller, a former JRC employee, has set up a petition on, and given permission to repost his petition letter:
Hi, my name is Gregory Miller. I used to work at a school in Massachusetts named The Judge Rotenberg Center (JRC) where we used powerfully painful electric shock devices (45 – 91 milliamps, at 66 volts) on students to control their behaviors. These devices are much stronger than police stun guns (1-4 milliamps). Unlike stun guns, the electrodes most commonly used at school are spaced 3 – 4 inches apart so that the electrical volts passing through the flesh create the maximum amount of pain with those amps and volts. The United Nations is aware of JRC, has called these shocks at JRC “torture”, and says that “The prohibition of torture is absolute.” Please see the attached video of a student named Andre getting shocked at JRC, covered by Fox News.
Rather than shocking students for only severe behaviors, JRC also shocks students for minor behaviors, such as closing eyes for 15 seconds while sitting at the desk, pulling apart a loose piece of thread, tearing an empty used paper cup, going to the bathroom in one’s clothes after signing that they need to use the bathroom for over two hours, standing up and raising a hand to ask to go to the bathroom, blowing small bubbles in saliva between one’s lips, and shocking a non-verbal nearly blind girl with cerebral palsy for making a moaning sound and for attempts to hold a staff’s hand (her attempts to communicate and to be loved).
I would greatly appreciate your help to protect my former students by petitioning Massachusetts legislators to make these shock procedures illegal. These students are among Massachusetts’ most vulnerable citizens and have no voice of their own to describe their pain. They need YOUR voice!
I urge you to please CLICK on the Petition Letter tab to carefully read the petition that I have written based on what I have personally witnessed at JRC, and sign the petition.  Then please invite as many friends as you can through www.Change.Org, email, Facebook, Twitter, and elsewhere, to sign this petition.  Please value these student lives enough to let Massachusetts know that Americans do not condone shock procedures in this country. Thank you.
Gregory Miller

Petition Letter:
Please Stop Painful Electric Shocks on Students at JRC in Massachusetts!
To Massachusetts State Legislatures: Please Stop Painful Electric Shocks on Students at JRC in Mass
I just signed the following petition addressed to: Massachusetts State Legislatures.
- Whereas, the Judge Rotenberg Educational Center (JRC) of Canton, Massachusetts is the only place in the world that specializes in delivering extreme pain as a behavioral treatment for autistic individuals and delinquent youths;
- Whereas, for the first time ever, YOU, including families of students at JRC, Massachusetts judges, legislators, and American citizens and voters, are allowed to see through video what electric shocks and torture look like on a student inside of JRC in Massachusetts, as recently reported on Fox News:
- Whereas, the United Nations has declared the treatment at JRC to be deemed as torture that the US government should end:
- Whereas, JRC uses shock devices (45 – 91 milliamps, at 66 volts) that are much stronger than police stun guns (1-4 milliamps) (see p.14):
- Whereas, some students have had to have periods of approximately 4 - 5 weeks off the shock devices in order to allow the bloody scabs to heal on their arms, legs, and torso;
- Whereas, JRC receives court consent to administer electric shock to control very severe behaviors, Massachusetts legislators do not directly observe the students with autism actually receiving high numbers of shocks for minor behaviors that are never included in JRC’s marketing materials, such as closing eyes for 15 seconds while sitting at the desk, pulling apart a loose piece of thread, tearing an empty used paper cup, going to the bathroom in one’s clothes after signing that they need to use the bathroom for over two hours, standing up and raising a hand to ask to go to the bathroom, blowing small bubbles in saliva between one’s lips, and shocking a non-verbal nearly blind girl with cerebral palsy for making a moaning sound and for attempts to hold a staff’s hand (her attempts to communicate and to be loved);
- Whereas, students who just observe their peers being shocked react in fear by standing up out of their seat, yelling or crying in reaction, attempting to pull their own electrodes off their skin, and/or pushing the arm of the staff away from the remote control… and are then shocked for these reactions;

- Whereas, non-verbal students with autism who receive the most electric shocks at JRC are not able to speak for themselves to describe the psychological harm they experience for simply being in the classroom while watching their classmates get shocked;
- Whereas, many parents may not have given “informed consent" because they signed papers without being permitted to actually see for themselves what “treatment” by electric shocks at JRC actually looks like, as now viewable on Fox News (see link above);
- Whereas, the electric shocks have not been demonstrated in studies to show that they reduce behaviors of students once they graduate from JRC and are away from the threat of fear and pain;
- Whereas, the academic and working conditions at JRC have been terrible, including approximately 40 students in a single room forced into labor to complete meaningless tasks such as counting 12 popsicle sticks and wrapping them with a rubber band in a large room without windows, all day long, 7 days a week, which arguably may lead to many student behaviors for which students are shocked;
- Whereas, there is now a wealth of accumulated data and resources on JRC from over the years for concerned legislators and American citizens to read that describes the abuses taking place within JRC, including:
- - Former JRC staff and author of this petition describes what JRC looks like from the inside: - comment_3113986
Therefore, we the undersigned strongly urge the Massachusetts state legislature to ban the use of aversive procedures.

Tuesday, April 17, 2012

From Asperger's and Me "I Like being an Aspie"

One question I see come up fairly often in autism/asperger’s communities is if there was a pill that could make your autism/asperger’s go away, would you take it?  I figured I’d answer that question.
Short answer: no, I wouldn’t.
Long answer: I like being me.  There are so many things about myself that I really like that are directly related or due to my having Asperger’s.
I tend to obsess.  It’s a neurology thing.  Thing is – I like obsessing.  It’s downright pleasurable!  I love it when I find a new thing to focus on – it leads to learning new things, gaining new hobbies, finding new skills, etc.  How awesome is that?  I find it wonderful to have special interests, and having those interests is sometimes a way for me to get to know new people.
I also have a very good ability to focus and concentrate, which is something else I like about myself.  It helps enable my learning new things about the aforementioned special interests, and means I can immerse myself into a task if I want to.  I love doing that.
I am detail-oriented.  I happen to take a great deal of pleasure in assembling furniture.  My ability to see details (as well as my ability to concentrate) means I am pretty darn good at it too, if I do say so myself.  I see details that other people miss, and when I’m planning a project I am often very thorough in thinking things through ahead of time.  (lately I’ve been planning exactly how I’d like to make a weighted blanket.  it’s fun!)
I am, as some may say, quirky.  I’m odd.  Thing is, I like being odd.  I like knowing that I’m different.  To me, the word “weird” is a compliment.  Not only am I not typical, I don’t even want to be typical.  I often think that my oddness gives me perspective that other people lack.  I don’t see the world the way most people do, and they don’t see the world the way I do.  Yay diversity!
I am a cat person.  I understand cats so very much more than I understand humans.  Humans are strange and contradictory and have social protocols that range from odd to baffling to downright offensive to me (yeah, I might get to that in another post).  Cats, on the other hand, are totally reasonable and very rarely confuse me at all.  I have been told that there is a good likelihood that my ability with cats comes from the fact that I am on the autism spectrum.  My response?  Awesome!
If I were to stop being an Aspie, I would lose all of that.  I don’t even know who I’d be anymore, as these are all very important parts of my personality and identity.  Yes, people tend to think I’m odd (yay!) and sometimes don’t see my worth (not so much yay), but I think these things make me nifty.  They make me, me.

Monday, April 16, 2012

From Pia at The Crack and the Light

ABA: Methods versus Mission

Big Daddy with blue hair for
Autism Awareness and Acceptance Month.
It has nothing to do with the post,
but I just had to share it.
He is the coolest man on the planet.

Selecting a therapy for a kid on the spectrum is a little like deciding on a religion.  Each therapeutic technique has its own set of beliefs, rules, objectives, and techniques... a little like religions.

What do you believe about autism? Is autism something to be "cured", to be "tolerated", to be "accommodated", or is it to be "celebrated"?

How do you think autism works?  Is it a brain disorder, a neurological difference, a whole body disease?

What is the purpose of therapy...  to change behavior?... to alter brain functioning?... to provide and adapt information processing methods to better fit the neurological picture?

What is the outcome desired for therapy:  being 'normal'?.... highest level of functioning?.... optimization of potential?

What you believe about autism can fundamentally effect what type of therapy you choose for your child.

This is why I believe that research into the causes of autism is so important:  once we have a better sense about the why, shaping the beliefs about autism's meaning becomes a little easier to accomplish.  And then, decisions about therapy can be guided by those beliefs.  But this is for another discussion, perhaps.

Today I wanted to discuss the difference between therapeutic methods and the mission of the therapy.


Okay, bear with me, because I am probably going to fumble along with this post.

Anyone who has been following J-man's story knows the following:

     * He has autism and apraxia of speech
     * He has been in some kind of therapy since he was 16 months old (ST, OT, ABA, EI)
     * We had some serious issues with putting him in ABA and have had both tremendous successes and frustrations since he has been in the program.
     * I personally like more relational styles like Floortime or Communicating Partners.
     * I believe that autism is a neurological difference in which the communication between the different areas of the brain is altered, and it makes things like language and social communication difficult.  I also believe that the capacity of the autistic brain to develop is tremendous but requires different methods and techniques than a neurotypical brain.
    * We believe J-man is awesome and his potential is unlimited.

There are other things that I believe it is important to mention:
     *  I believe all children deserve to learn how to be in this world, and ability or disability should not exempt them from this.  Even the hard stuff.
     *  I believe every child learns differently and is motivated to learn for different reasons.
     *  Behaviors exist for different reasons, and the decision to increase, decrease, or change a behavior needs to be weighted with the reason the behavior exists and the reasons to change the behavior.
     *  Communication and connectedness are more important than words.
     *  We convey messages to our children via our actions moreso than our words.

Recently I have been observing a lot of debates about the benefits and drawbacks to different therapeutic techniques.  I'll be honest, most of these debates have been on (in-your)Facebook... *sigh*... but a few have been in Real Life, in relation to the legislative work I have been doing this year.  I have found some of these debates particularly interesting, and I have noticed that often the arguments fail to differentiate the methodsversus the mission.

So I thought I would take a stab at it.
And I am going to pick on ABA.  Why?  Cause it is just soooo easy....

ABA, or Applied Behavioral Analysis, is one therapeutic technique that tends to generate a lot of heated discussion.  ABA takes a task or behavior, breaks it into its smallest parts and builds upon each part is a systematic way in order to eventually get to the full behavioral step.  It focuses solely on observable behavior and each step is tracked through through data collection.  It is not concerned with internal processes, merely on what can be externally seen and tracked.  Largely that is because it comes from the behaviorist tradition in which the focus is merely on observable behavior and its relationship to the environment.  The internal world of thought, cognition, and feelings was of little importance to the behaviorists, and while that extreme position may not be adhered to as strictly today, it has definitely informed the ABA tradition.

As a result of its focus on specific observable (and trackable) behaviors and its strict adherence to external environmental factors in shaping behavior (reinforcers, punishers, etc), ABA has a wealth of data that shows it is highly effective at changing behavior.  Period.  As a method, it works.  If you want a behavior changed, you can get behavior change with ABA. If you want to teach a task, or shape attention, or increase or decrease a certain behavior, ABA works.  It works with autistic people.  It works with neurotypical people.  It works with children, adults, the old and the young.  The principles and methods are effective... to me, there is no question about this.

And a child who has difficulty with information processing... who may have difficulty allocating attention and learning things that require the coordination of multiple brain centers at any one time... ABA can help by both providing motivation, positive reinforcement, errorless teaching through careful analysis of the task and situationally setting the task up for success while concurrently increasing the difficulty up to the next level.

So as a method, ABA is pretty awesome at what it does.

But in my (humble) opinion, ABA cannot make you "not autistic". You might be able to get a child to act less autistic, but I promise you... they are still autistic.  They still have their brain, and it is a pretty sweet brain as it is.  The pathways might become more defined because through repetition and effort the child has learned those skills, but they still process the world the way they do.  They may be able to respond to new information faster because they has developed those other pathways and therefore do not have to try and process everything at the same time...  memory and skill sets take over..  but they still are autistic.

And this is where the mission of the therapy starts to become really important.

What are you trying to accomplish?  What are the goals?  And why?  What message are you sending to the child?  Are you changing their behavior because it does not fit into social expectations, and if so, why?  Is it dangerous?  Distracting?  How important is it to be like everyone else?  Is it?  What are your desired outcomes?

These are murky questions, people.  As I said before, ALL children (autistic, neurotypical, whatever) need to learn about the world, and we (as elders) need to teach them. I think ALL children should be given the opportunity to learn... within their ability.... to communicate, to behave within some basic social rules, to develop academically, emotionally, and socially within their highest potential.  Of course, who determines what those things are is what gets murky, but overall I do not think that it is wrong to expect all people to strive for these things.

However, I think we have to be very careful when therapies start to promise to change the child OUT of their autism.  The implication is that the autism is wrong, and therefore the child is wrong.  And THAT is wrong.  Autism isn't wrong.... autism just IS.  And I might... as a parent... need to adapt my teaching and interaction style based on that difference.... and ABA might be a helpful tool to do that.... but to assume that the goal is to so fundamentally change the child so that they are "not autistic" is both foolish and insulting.

Recently a friend of mine and I were talking about ABA and her hopes for her child.  She wanted her kids "indistinguishable from their peers".  I guess I understand that to mean she doesn't see a world where their autism can be any benefit to them, and therefore getting rid of it should be the goal.  I told her I don't see that for J-man.  To me, ABA serves a purpose in that it helps teach him to be able to do things that he couldn't learn through just natural observation.  It breaks things down and provides reinforcement for the tough work of learning.  But my mission isn't to make him "not autistic"...  my mission is to make him the best J-man he can be, and the world is not built to teach him in a way that is accessible to his learning style.  ABA methods help.  But I am on constant guard for the curest messages that might get to him.... and it is very hard to communicate that with the therapists who tend to look at atypical behavior as deficits.  Which might be why I have always tended to like the relational approaches more... themission is more about creating relationships with the child where they ARE instead a more adult or "normal" way of being.

So we do ABA because as a tool it is working to help J-man learn.  But we stand on constant guard for WHAT they are trying to teach him, and I do foresee a time when ABA as a central therapy for him will be used up, because while the methods might still be effective, our focus for what is important to learn will change.  

My advice to those who are out there and trying to figure out what to do:  read as much as you can about different techniques.  Go with therapies that have empirical evidence (and I mean serious journal publications, not just some study they did and got published in the journal of crap research).  Carefully vett the therapists:  what are their goals, how do they view disability, what are their beliefs about learning and behavior, and why?  Examine your own ideas, and ask yourself:  does this honor my child?  Does this help him be the best HE can be, or am I trying to fit him into some kind of "ideal" that I want?  Am I meeting him where he is or am I trying to force him into being something he is not... and frankly, doesn't need to be?

Sunday, April 15, 2012

From the blog "Asperger's and Me"

Apparently the CDC recently released a study claiming that now 1 in 88 children have autism.  I’ve been seeing a large number of articles and blogs about that, with lots of speculation as to why it could be happening.  The answers seem to largely be split between “better testing” and the usual conspiracy theorists talking about vaccines or “toxins” or other such things.  I did, however, find two articles to be particularly interesting.
This article  was one that I found talking about the issue.  There was one particular sentence towards the end that really jumped out at me.  ”[The CDC] checked health and school records to see which children met the criteria for autism, even if they hadn’t been formally diagnosed.”
Maybe it’s just me, but that seems very, very odd.  Health and school records do not a diagnosis make.  Instead, what it seems to be is that 1 in 88 children might have an autism spectrum disorder, but it does not seem at all reasonable to treat that statistic like an actual fact, given how it was achieved.
This brings me to a blog post  I found talking about the issue.  In it, a parent of a child with a developmental delay (DD) cautiously speculates that maybe an increasing number of children with DD might be getting lumped in with autism, even if they don’t actually fit.  Why might this be happening?  Well, there is a lot of overlap.  They can look superficially similar, and it can require more careful testing to determine what is actually going on.  Even worse, parents have incentive to diagnose their developmentally delayed child with autism, regardless of whether or not it’s accurate because apparently right now autistic children get better support and more services than children with other developmental delays.
I was actually rather shocked when I read that last article.  Not just because of what it said, but because I realized that in my ponderings on Asperger’s and autism, thoughts of other DDs had never even crossed my mind.  I like the idea of neurodiversity and autism pride and celebrating differences and all that stuff, but how can I champion neurodiversity while privileging ASDs above other forms of DDs or neurological differences?  The answer is – I can’t.  Yes, my personal focus is Asperger’s because that’s what I have, but I can at least keep in mind that there is more to neurodiversity than autism and NTs (neurotypicals).  April is autism awareness month, which I’m sure is a good thing for many people, but I think for me it’s also a good time to remember that there are other things that also deserve awareness, and they seem to be getting lost in the noise.
All of which leads me to speculate if maybe the people doing that CDC study were unconsciously privileging autism as well – lumping children with overlapping symptoms into autism, even if they fit something else better.  I guess that’s another way of saying that I’m not so sure I trust this 1 in 88 statistic.

Saturday, April 14, 2012

From Cracked Mirror in Shalott

The Hard Things

Often, but especially this month, there tends to be a false equivalency that gets promoted- that Neurodiversity advocates ignore the hard things, or that we don’t experience the hard things. From there, self-advocates are told that we can’t speak to the lives of other, usually younger, Autistics.  Obviously this is false. The hard things are a part of our lives, are a core part of them.
On the 18th of March, I had to go to Baltimore. To manage airports, I have a pretty set script that I follow in order to make sure that I make it through the airport and flights. Usually it works fairly well, and if I get confused I let a security person know I”m Autistic and it typically works out. The first time I went through security by myself, I had a TSA agent walk me through the security point step by step. (I have a soft spot for Pittsburgh, PA’s TSA agents as they’ve treated me fairly well. I can’t speak for anyone else’s experiences though.) I’ve had people let me be or give me appropriate instructions when I’ve lost words. Mostly I have decent experiences. Not as peaceful as trains, but decent.
Except this time I flew southwest, and their gate check process is different. Instead of picking your bag up at the gate, they put it through to the carousel in bag claim, and instead count it as a late bag check. A bit nerve wracking as I rarely if ever do a regular bag check. But this wasn’t the hard part. Nor was sitting on the floor next to the assigned baggage carousel for an hour. (I took video of myself rocking there, and it is edited in with other video on my youtube channel.) But by the time I got through what my bag looked like, I couldn’t verbalize words any longer. The words went away. Thankfully the BWI Southwest baggage customer service acted like it wasn’t unusual at all for someone to get out a netbook and start typing instead of talking. I also had to get help getting on the van- which was directly across the room- to the hotel.
That evening, I had to leave dinner because I couldn’t sit upright any more. My brain was completely done, and I poured coffee on the table because I could no longer judge where my cup was in space. The next morning, I couldn’t get out of bed because I had no clean clothes. The very thought of putting on dirty clothes Shut me down for hours. Thankfully, the thing I was at was Developmental Disability centered, so the organizers were understanding, ordered me lunch, managed dealin with the airline and hotel, and the person I was supposed to facilitate with took over my duties. (Thank you Nachama!)
And this is only a mildly hard “day.”
Even the tiny Hard things add up. Loud noises making me need to hide, camera flashes leaving me utterly disoriented, the wrong smells, colors, and textures- the little hard things could make me have issues where I would normally have none or even where I’d normally excel. I curl up in a ball in a grocery store because I don’t know the practical steps rather than economic difference between using credit and debit. I sit on floors in airports for hours because I can’t figure out the steps to get to my hotel. I get C-Diff or MRSA because I can’t remember when to clean. I pee myself because I hear the wrong noise and become scared. I can’t tell until the last moment that I need the restroom, and then I better get running before I forget or lose control.
A thousand tiny hard things.
I had to live off campus because I didn’t understand paperwork for housing and couldn’t figure out that I needed help. I had to drop out of school and became house bound for 6 months because I didn’t understand or know how to ask for help with school tuition or paperwork. I watched my carefully laid goals collapse, and can’t do anything beyond repress and hide when people I know graduate or talk about completing midterms. I lose my ability to conceptualize my goals after having plans go awry.
A thousand hard things.
Becoming homeless for a thousand tiny reasons. Being unable to navigate the housing system, and having to rely almost entirely on my Intensive Case Manager to even fill out the forms let alone deal with the people. Having difficulty with a form because I want to answer truthfully but have no idea how much people have spent buying me toilet paper- and then crying, pacing, yelling the same phrase repeatedly and staring at blank walls. Hiding in my 3 year old niece’s closet because I can’t calm myself, can’t process my environment further to get away from what is bothering me. Being trapped in town because I can’t speak that day and I need to find a way out.
Hard things.
Knowing something is wrong, large or small, and not having the words for it for 5 years. Being told I’m articulate when I can’t get my basic needs across to be met. Trying to report abuse, and not having the words to articulate it yet- then having my call dismissed because of my disabilities and inability to articulate it. Pressing myself into walls or running into them full stop because the pressure is soothing and I can’t get my world to stop- and then being treated poorly for daring to do so. Being put through unneeded procedures because my self soothing behaviors look scary to others, and echoing (oh echolalia!) their words back when they ask why I do them- Is it because of self hate, self loathing? Do you want to die?- because I don’t have the words yet to tell them how it really feels in my head.
Life is full of hard things.
But the hard things don’t make that life less worthy. It doesn’t make it okay to deny accessibility. It doesn’t mean you can’t adjust a little- and often to mutual benefit- to make the world more navigable to us.
The Hard Things don’t take the joy out of it. It doesn’t make the self soothing activities less self soothing. It doesn’t take the joy of observing the infinite diversity of our world within even human neurology- a joy that we can share, if we are willing, despite having infinitely diverse faiths or even having none at all. It doesn’t make my niece’s bringing me my stuffed cat less an act of love. That my former cat, ‘baka, was my service animal that I needed to help me self regulate doesn’t make my affection- nor even my grief at her passing- less deep.
The Hard Things, though, mean that you will look at them and say:
I don’t want that for my kid.
That is not safe.
That is too strange to do in public.
If you’d only “pull yourself up by your bootstraps” and get over it, the hard things wouldn’t be hard.
Your tears and meltdowns prove my point of your incompetence/that you will always be a child.
instead of finding a way to make the hard things livable. Instead of accepting that I need help today even if I didn’t yesterday. That I am an adult who is able to make my own choices- even when they are bad ones. That the reason it’s so strange is because of repression. That there are ways to make this all safe. That risk is a part of being human.
That there is joy in being one’s self.
Written for Autism Acceptance Day and Month. Many Thanks to Paula Durbin-Westby for originating Autism Acceptance Day and all the effort she has put into this event- please go check out some of the other posts she’s collected. Thanks also to Emily T for her sharp editorial eye.

Friday, April 13, 2012

From Wildeman's Words

Reflecting on World Autism Day

Whenever I see a comment that says "Autism is everyday, not just once a year" in reference to Autism Day, I have to pause for a moment. Some say that just to add to awareness, but some are genuinely insulted that there is a day on the calendar named for our cause. And that's not just the cause of people like me who are lucky enough to be verbal, or parents working with their children, but everyone who lives with autism, everyone.

Having a day on the calendar given to us in this manner is not to suggest that people should only pay attention to autism once a year. It is a grand step towards educating and awareness and we should all be proud of it and thankful for it. Every step that goes towards awareness is a good one and having a day is no small achievement. And lets also not forget that April is also Autism Awarenes Month!

Let me put it another way with an example. Take Veteran's day. Veterans should be thanked whenever you come across them, not just once a year. But there's a lot more to veterans day than that, isn't there? It's a day set to commemorate them and honor them.

Yes, to those of us who live with autism, it's every day. To those who don't, we need to not expect people to wake up and pay homage to autism every day. There's only so much you can expect out of people who don't live with it. There's a fine line between education (awareness) and shoving something down someone's throat. Don't shove it down their throats, the results always turn out bad.

Now, look how far Autism Day has come. It's gone from being celebrated with blurbs in the newspaper to being heralded on all media sources. I saw an advertisement that said "make it blue" and liked that. It's for awareness and everyone sees it. It won't be long before you go buy a calendar and find it marked on that day. That's a great achievement towards awareness.

So I say "thank you" for autism day! Thank you for a day that brings awareness to so many people across the globe. Thank you for a day I don't have to break my own back to give out that awareness. Thank you for a day that may mean less stigma and more understanding for a growing issue. Thank you for showing me how much you are trying to understand.

The day is an honor, not an insult. It's recognition, not ignorance. Should efforts continue to provide awareness and education year round? Of course! No one is saying it shouldn't.

Thursday, April 12, 2012

From Mostly True Stuff

Autism Freaking Awareness Month.

Yay. It's April. It's Autism Awareness Month, and to celebrate, me and the five million other people who blog about autism have set out to piss each other the hell off. Or at least, some think we do.


This is what autism looks like. So handsome.
It's tough. I think we go into this "community" thinking that because our children have the same diagnoses, we are ALL the same. It's totally ironic. We shout from the rooftops about how great it is to be different, but the minute someone thinks differently from us, to hell with them! (This isn't just an autism community thing. It happens everywhere.)

Just like autism is a spectrum, parenting a child with autism is a spectrum. We approach it differently.  We have our own beliefs as to where it came from, how to treat it, and how to help others.  And that's good.  I have my own beliefs. I have my own damn blog. You're here. You're reading it.  These are MY views. They are not that of the autism parent community and definitely not shared by people who HAVE autism themselves. 

Where it Comes From:

This question is huge. And it's a huge source of fighting within the community. Despite all of the research, the vaccine debate rears its ugly head in too much of the source-of-autism discussions. I do not believe that vaccines CAUSED Casey's autism. I think this jump in numbers of autism cases sort of lends itself to "proof" that vaccines don't cause autism. If they did, this anti-vax movement would have AT THE VERY LEAST slowed the prevalence of autism. It has not.

I do believe that better diagnostic criteria can be attributed to the rise. It doesn't nearly explain ALL of it though. If so, there would be a HUGE subset of adults who are autistic and were never diagnosed. It's called the "Hidden Hoard" theory. Granted, I think there are A LOT of people who have high-functioning autism who were never diagnosed, but that still doesn't account for all of those who went undiagnosed.

But what it really comes down to is that we just. don't. know.  Which makes research so vital.

Treating Autism

There are the Mommy Warriors. The Jenny McCarthyers, who say you can "cure" autism through diet, cleanses of different sorts, vitamins, etc.  There are the behaviorists. These believe that the way to "cure" or treat autism is through a regimented program (ABA and the like) that is akin to a full-time job for kids on the spectrum.  There are those who don't treat it at all. They think it's completely natural. And then there is EVERYTHING in between.

I get comments from people ALL OF THE TIME about how it's wrong that I medicate Casey. Their child does not have the same autism my child has. If your child can be "cured" through Music Therapy, your child does not have the same autism.  I treat my kid based on my own research, his personality, my personality, and his medical and behavioral needs. I personally do not believe that he will be "cured" and I think this "curing" autism speak is dangerous. Not all kids on the spectrum respond to dietary changes (Casey didn't), not all kids need or can do 40 hours a week of ABA.  You treat your child based on their needs. Don't compare your child to others and please, for the love, do not tell another parent that what they are doing is wrong just because it's not how YOU would do it. If they are asking for your opinion or help, that's one thing. But to seek out parents to preach to is something else completely.

Helping Others 

If we all believed staunchly that research was key, we'd all go to every Autism Speaks walk and hold hands and sing. But we don't.  I understand the criticisms of Autism Speaks. Too much money spent on ads you don't agree with, too much money spent on research, not enough spent on services towards individual families.  Many have criticized the amount of money that the head of Autism Speaks makes ($391,892; the highest paid employee of Autism Speaks, the Chief Science Officer, makes $456,420 ). It's a lot of damn money. It does make me cringe a little when I think of how hard I worked to raise the little money I did for the Autism Walk the year after Casey was diagnosed, only to have it go to make someone rich. But then I looked into it. Check out the salaries of the top paid people at these organizations:

American Cancer Society: $2,222,000
American Red Cross: $1,000,000
Susan G. Komen: $481,000
United Way: $864,000
(figures are from, verified through BBB Charities)

These non-profits are run JUST like other businesses. In order to grow the charities, they need to compete; in order to compete, they need to have CEO's who know what they are doing. It may not be right, but it's the way it is. If you don't like it, don't support them.

I do believe that Autism Speaks (and the other organizations listed above) does a lot of good. Autism Speaks is educating people. They are raising awareness. They are giving families who are newly diagnosed some direction. The reality is that they can't help every family with a child with Autism.  There are just TOO many of us.  They should have more on their staff who have autism themselves. I think it would prevent some of the outrage that has come over some of their ad campaigns and terminology. Regardless, they aren't going to be able to make everyone happy.

There are many fantastic organizations that deal mostly in research. Research is important. It will help future generations in better diagnostics and treating. I particularly like If you believe in the importance of good research, this is a great organization to give to.

For Autism Awareness Month, I'm asking the same thing I asked last year: for your help. Specifically, to help parents YOU KNOW who have children with autism.  Call a mother of a child with autism and ask her if you can take her kid(s) for a couple of hours. Respite is what I think we, as parents, need most. And it's really one of the hardest things to get. With Abby, I got respite just because she has an extra chromosome. She got the funding for it right away. For parents of children with autism, even here in Virginia, it's TERRIBLY tough to get. I looked into it with Casey. The waiting list is 5 years. He's been on the waiting list for respite services in Washington State since he was 18 months old.  Autism is TOUGH, there is very little relief. We don't sleep. We deal with more stress than I think others would even believe.  

If you don't have the capacity for whatever reason to babysit a child with autism, send their parents a check. Tell them to get a babysitter. Or even just get a movie and treats to watch after they've sedated their child for the night. But not us. Lance and I are good. We get a lot of help from the wonderful people around us. We have our nanny coming. So not us. You have to know someone else who has a child with Autism. If you do not, email me, I'll send you an address. Do something, then tell me.  I'd LOVE to hear what you did. 

Back to my original thought. Autism is a spectrum. The ways we approach it and deal with it are going to be as different as our children are. As we are. And that's okay. If you disagree with me, that's totally fine! In fact, I welcome it! It's how I learn about other points of view. It's how I see things I haven't seen. If nothing else, it gives me someone to fight with.

My husband won't fight with me.

But remember, not everyone who speaks their mind wants to be fought with. Sometimes they're just airing things out as a way of dealing with them. Working through them. My views on autism have changed a lot in the last seven years. I'm still learning. Be nice to the jerks who aren't as awesome as you.

And, I'm a little late, but I'm linking up over at Adventures In Extreme Parenthood, if it's not too late. If it is, Sunday, I will murder you in your sleep. Love.

Wednesday, April 11, 2012

Guest Post: Winning Against Mesothelioma

Winning Against Mesothelioma 

My world just seemed to crumble on November 21, 2005. I had three and a half month old child, my only child, and I had just been diagnosed with cancer. It was malignant pleural mesothelioma, a very deadly type of cancer. At this time I realized that I was going to have to face one of my biggest fears, facing a deadly illness, and that I was going to have to be stronger than I ever realized possible.

I was referred to Dr. David Sugarbaker, the world's leading mesothelioma doctor, at Boston's Brigham and Women's Hospital. He helped me to have hope and boost my confidence. He helped me to believe that I would beat this cancer and live to see my daughter grow up. With a survival rate of only 2% after five years, it was very discouraging, but I was determined to be a part of that small percentage of mesothelioma patients who lived. I would win this fight against cancer. I spent the next year using every bit of energy I had to fight this disease. I had to travel to Boston, about 1900 miles away from my daughter, now six months old, who was staying with my parents while I fought this cancer. I had surgery that removed my left lung and all of the lining around it where the tumor was. After surgery, I spent months undergoing treatment for mesothelioma which included chemo therapy and radiation, but I continued to raise my daughter. I spent the first year of her life battling cancer, but she knew nothing of it. We had a huge celebration for her first birthday. Friends and family traveled from all over to not only celebrate Lily's birthday, but also to celebrate the fact that I was winning my fight against cancer. It was only one month short of a year after being diagnosed that I finished my last treatment. I promised myself I would never have cancer again.

I learned many things through that year of fighting against cancer and the years that followed. Now I do not take things for granted. My cancer made me look at everything differently. Now I appreciate the little things in life much more. My daughter's laughter, a puppy's breath, a rainbow after the rain are all reminders to me of how precious life is and that I need to LIVE.

There are so many amazing people that I've met along this journey; people who will forever remain in my heart. It is the people who tried with all their might and still lost their battles, the people who support and care for their loved ones while they are fighting cancer and those who have won their battles who continue to inspire me with their determination. I want to raise awareness of mesothelioma on their behalf. Mesothelioma is a real disease that affects real people.

I'm living my life as best as I can, being grateful for everything. Even when I have bad days I remain thankful. In my eyes, this is what life is about.

From Niksmom

Did you know…April is Autism Awareness Month? If you don’t live under a rock, you’ve likely seen the latest figures released by the CDC last week regarding the rise in the rate of autism in the United States.  If you missed it, here’s the bird’s-eye view:
1 in 88 children  ~ 1 in 54 boys  ~ 1 in 252 girls
I haven’t yet had a chance to write my own post about what we are doing forAutism Awareness Month and World Autism Awareness Day. ( Read last year’s post here.), but I wanted to make sure I shared these posts from some of my very dear friends:
Mom-NOS“The blue light reminds everyone who sees it that people with autism are…” 
And as he stared out into the blue, he answered softly in a voice that came from a million miles away: “Awesome.”
(You can read the full post here.)
Jess“Awareness is not the goal. It never has been. But it is the foundation without which no other change can happen.”
(You can read the full post here.)
Did you know that April is also the Month of the Military Child? Our military families are not immune to the effects of living with and loving family members with autism. In fact, they need our help.  Please, take the time to read the words of my friend, Rachel, who has been fighting tirelessly to change the inequities in the military health care system with regards to autism services.
In a post featured by Autism Speaks, Rachel writes: “As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.”
(Read the full post here.  It includes information on the Caring for Military Children with Autism Act and how to contact your Congressional delegate(s) to ask for their support of this important legislation.)
I hope you will subscribe to the posts from The Thinking Person’s Guide to Autism. All month long, TPGA is featuring “Slice of Life” posts from Autistic people of all ages. Because, awareness is great but ACCEPTANCE is so much more important.
And, finally, I’d like to encourage you to visit the Autistic Self Advocacy Network.  The name speaks for itself as the organization empowers Autistics to speak for themselves.
If you don’t live with autism, it may be hard to understand why it is so important to listen to the voices of those who actually are autistic. These are the voices which will help us shape the future for our children, open the minds (and doors!) of employers, educators, business leaders and politicians about what is possible for so many people who are otherwise marginalized because of myriad manifestations of autism. These are the voices which can help us establish more and better supports for adults with autism once they leave the school system.
Their voices can help shed a light on the tremendous potential within each person regardless of how autism affects them. The potential within each person may not be the same, but the potential to be so much more than what meets the eye is far greater than you might imagine.
Only through dispelling the myths and the fears, through support and acceptance —true acceptance, can we empower each autistic person to meet their potential.
So, um, I guess THAT is what we’ll be doing for the month —and always; helping our son find his “voice” and meet his potential.

Tuesday, April 10, 2012


Labelled With Love (Alphabet Street?)

Tall, stumpy, beautiful, minger, fat, skinny, clever, thick, odd, boring, quirky, loud, lazy, blonde, ginger, selfish, slutty, bald, hirstute.... Labels are all around. They are attributed to us to mark out our differences to the herd so that we can sort out life's rich tapestry into pigeon-holeable categories. Us humanoids are quick to judge and categorise - presumably some deep-rooted self-preservation instinct.

However, the subject of labelling kids - to willingly attach a label, highlighting their differences, to your own flesh and blood - brings a whole orchestra of tooth-sucking and "expert" (you know the type I mean) opinions! "There's a label for everything these days", "ooh people are so quick to label their children - we're getting so American"!!!!! "It's all to do with Bad Parenting" (?!!!) There are all sorts of negative articles about the stigma and damage that labels can bring.

When I was at school I can't remember any of my classmates sporting any clinical diagnoses of anything. There was always the "square", the "boffin", the "thicko" or the "weirdo". Yep - who needed educational psychologists - anyone slightly different and we just made up our own labels and stuck them on with super-long-lasting glue. Kids are pretty unforgiving. Differences scare them. Their form of self-preservation is group attack. Horrible. It makes me sick to my stomach that I might have had a part in this filthy show of human nature - I wish I could find those poor kids and apologise, be their friend, protect them.... Sigh. And what happened to them? Did a whole school career of being negatively defined by their classmates lead them to happy and fulfilling lives - god, I hope so. I hope they found their dreams and shouted "F**k You, losers - look at me in my big shiny car with my wonderful career and perfect life, you cruel bastards". But let's get real. They possibly have lives pitted with low self esteem, trust issues, depression etc etc etc. Oh how sorry I am. I just wanted to be "normal", part of the majority....not noticeably different...

Fast forward to now and most classrooms have at least one kid with a diagnosis of something: ADHD, Dyslexia, OCD, Dyspraxia, ASD - some kids even have two or more labels since a lot of these conditions go hand-in-hand - then they get a special collective label - "Alphabet Kids". Jaysus. Who knew?

So J is "labelled" with ASD (an Autistic Spectrum Disorder). High Functioning Autism. He has a Statement of Educational Needs. He gets Disability Allowance. He attends an ASD specific unit attached to a mainstream school. He gets speech therapy and occupational therapy. His label marks him out as different to "normal" kids of his age. And different he is - quirky, hilarious (his favourite word, incidentally!), scarily clever, socially inept and unable to deal with many everyday situations. His label is not debatable - he looks like an angel (when he's not constantly picking his nose!) but his "differences" are setting him apart from the crowd more and more as he gets older. However, he is in the right place, getting the right support and spends several sessions a week in a mainstream class (with support).

I have no issue with J's label and don't think I'd find anyone who does because his autism is fact. It is thankfully recognised as one of the big hitters these days. The ASD label brings much needed help and support (in some areas but not others....whole other post...grr)

It's the kids who are on the cusp of "normal" that fall through the gaps. The ones who, to all intents and purposes, can look like they're coping in a normal classroom setting. Many of the diagnoses that encompass what, on the surface, looks like "bad behaviour" are the tricky ones - this is the grey area that causes the tooth sucking debates. A lot of the behaviour looks like an exaggerated version of normal kid behaviour - figeting, bumping into things, hair twiddling, constant trips to the toilet, impulsiveness, lack of self control, too much talking, rudeness to figures of authority........ you get the idea. In a society where One Size of Education is supposed to Fit All (unless you're minted and can go Private) these Square Pegs are going to come to light. Particularly when they reach Secondary Education where teachers take no prisoners - it's all about results and not at all about individuals as far as I can gather (Shudder). This is where the debate comes in. Should they be labelled? Would a label make them feel more different or would it be a relief to them to know that they're neurologically programmed slightly differently to their buddies and can get some extra support? Would they grow out of their behaviour eventually without a diagnosis? Would a label become a self-fulfilling prophecy?

I really don't know the answer to this. I've thought about it a lot. I do wish people didn't use that word "Labelled" though - it sounds like a Stigma which is crazy considering the fact that many really successful people have/had similar conditions: Einstein - possibly Aspergers/ADHD; Mozart - possibly on the autistic spectrum/ADHD; Gary Newman - Aspergers; Stephen Wiltshire - High Functioning Autism; Daryl Hannah - mild autism; Tom Cruise - ADHD.... The list goes on. If the L word was replaced with "Recognised as being a perfectly acceptable and wonderful human being who struggles with a few areas of life and could really do with a bit of help now and again and a bit more understanding and a lot less judging" then that would be make the debate a no-brainer! To my mind - my adult mind - being different is just fine. Great, actually. I'm drawn to quirky interesting people. I love eccentrics. I've never particularly liked conforming. But kids hate to be different. So what would a label do to them? To their self esteem?

Actually, I think it depends on the individual. Differences are ok. It's down to whether those differences are causing an impairment for the child or not. Are they stressed out of their minds? Do they cry a lot? Is their work suffering? Are they getting told off a lot in class? Do they struggle with friendships? Are they being labelled anyway by the other kids? Are they angry and frustrated at home? Are they getting less and less invites to parties/playdates? If any of this is the case then, as parents, and knowing that there's help out there (and "help" doesn't always mean drugs - there's a whole host of other methods/therapies etc as well) , I think we'd be very very wrong (and cloyingly British!) to brush our concerns under the carpet and ignore the situation and refuse the label. If the child is quirky, but happy then all power to them but please please please watch out for any signs of bullying when they get into secondary school.

Blimey, it's a minefield. And here's the skinny: I know a little boy who is struggling. He says he's rubbish. He hates school. He finds it very very hard to sit still. Friendships are tricky for him. His self esteem is at rock bottom. He is hugely knowledgeable about the history of video games. His peers sometimes call him a cry baby. He has a lot of irrational fears. He is extremely bright and funny. He is very over-sensitive. He finds change very hard. He has a brother with autism. He is different. His parents don't want those differences to be seen as negatives and have started on the quest to get him some help to be happier. They have come to the conclusion that if a label will help and therefore make his life happier, then bring it on. He's a very loved, loving and totally cool kid. I should know. He's mine.



Autism Blogs Directory

Related Sites

General Science-Related Blogs