Tomorrow Is Too Long to Wait for Inclusion

The Real End Game for People on the Autism Spectrum

a chess board with the light pieces blurry in the foreground and the dark pieces focused in the background

By Jess Wilson

A Drug to Improve Social Skills

The big, bold headline in USA Today read, Experimental Drug Gives Hope For Rare Disease, Autism. The sub-heading read Doctors Hope Abaclofen Will Also Improve Socialization Skills In People With Autism.

It went on to describe the success of STX209, or Arbaclofen, in early trials with a small number of patients with Fragile X. The success was most notable in improving social withdrawal in the trial group. Since, according to the article, nearly a third of the population diagnosed with Fragile X also have autism, researchers have high hopes regarding Arbaclofen’s implications for the broader autistic population.

The research is exciting. To call it novel and ground-breaking are not exaggerations. This is big, new, hopeful stuff. But like a lot of exciting, novel, ground-breaking, big, new, hopeful stuff, it comes with questions that need to be answered. The biggest of which, for me, is Is it going to be good for our kids in the long run?

When I read the article, I stopped short at this:

“If an intervention makes progress in helping someone navigate the world on their own terms, that’s good news,” [Ari] Ne’eman says. “But let’s remember that “looking and acting normal” aren’t necessarily the only or best way to do that. … It’s important that we have a meaningful conversation about whether or not we’re focusing on the outcomes that matter for making autistic people happy, instead of focusing on making us appear more non-autistic.”

Hopefully, Arbaclofen does the former. Hopefully, it helps people like my daughter navigate the world more easily ON HER OWN TERMS. Hopefully, it simply mitigates some of her toughest challenges and allows her to still feel as though she is fundamentally who she is. But before we run headlong into embracing any of these revolutionary drugs or ground-breaking therapies, I think we have a responsibility to ask those questions. To, as Ari’s quote implies to me, engage in a meaningful dialogue about the cost to our kids. Because, like it or not, there’s always a cost.

Is Repetitive Behavior Really Hamful?

One of the ‘core symptoms of autism’ that is mentioned in the article and that many drugs seek to address is repetitive behavior. I have to wonder, for whom are we addressing repetitive behavior? Is it really harmful to autistics? Is finger flicking or rocking or otherwise stimming really an impediment to a successful life? Or are they really problems more for US – the NTs who become uneasy because we have no idea how to react to someone who doesn’t fit the mold of what makes US comfortable? And most importantly from my perspective, what happens to the impulse to stim when we quell the behavior that it results in? Does it disappear? Blow off into the wind? Break down into waste and find its way out of the body?

Stimming serves a purpose. All behavior does. Ask someone autistic. I have. And the answers I’ve gotten are “Calming. Soothing. Shutting out an overwhelming world. Focusing. Freeing. Comforting. “

So take away the vehicle for all of that – for calming, soothing, shutting out an overwhelming world, focusing, freeing, comforting – and what do you leave in its place? Without the behavior that served those purposes, how does a person who might very well live in a constant state of high alert, who is unable to filter the constant sensory barrage of this life, for whom there is no natural hierarchy of input, supposed to compensate for all of that overwhelm? What tools do you leave them in return for the one that you’ve taken away? Or do you simply take it away because it’s not normal and not normal is harmful?

I wrote the above and put it into my Drafts file the day that I first read the article. And then I walked away. It was too big to process in one sitting. I needed to sit with it awhile, to chew on it and to think through its huge and frankly, kinda scary implications. I had to reach a point where I was ready to say out loud, Yes, there was a time, early on, before I knew anything different, that all I wanted was for my kid to look normal. Because looking normal meant acting normal which meant being accepted by society which meant an easier life. Right? Isn’t that the formula? Isn’t that how it works? Change behavior, change a life. Right?

Life Is Not Formulaic

And then I had to figure out how to say No, that’s not it. This isn’t math; it’s life and life is messy and sticky and doesn’t lend itself to nice, neat equations and pretty little formulas. That suppressing who we are without a valid and comfortable and AUTHENTIC means to express what we NEED to express can be far more dangerous than not fitting in. That being taught to pass for something that you’re not and succeeding at it may mean success on the outside but what the hell does it mean for the inside? That being taught that what you are is not okay and that you, therefore, need to pass as something that you’re not can be deadly. That self-esteem and confidence and self-love and the deepest of personal truths are what are on the line. That I’m not being overly dramatic in taking it there. That I know that because I’ve read so many blog posts and had so many conversations with autistic adults who teetered on the edges at various points in their lives – who literally contemplated suicide, or tried, because the message that they got – whether it was the one that was intended to be delivered or not – was that who they are was not okay.

I walk the line here. It’s not a free-for-all. There ARE behaviors that are not okay. We live in a civilized society. There are some reasonable expectations within that structure that we, as participants in it must learn to meet. That we won’t hurt others. That we will respect others’ privacy and safety and dignity just as we need and expect them to respect ours. There are skills that are necessary to enable us to interact with others, to make friends if we so desire, to find and keep employment. They are important to learn.

And so too, life is absolutely, positively, without question, easier when you have the ability to make yourself understood in some fashion. And it’s sure as hell easiest when that fashion is the same as everyone else’s.

So by no means do I mean to imply that I think that we should not teach our autistic kids to play by society’s rules just as we do with any kid.

But for me, the underlying questions loom large in every single attempt I make to give my child the tools to conform, to communicate, to participate.

At what cost?

Is it still going to be good for her when she’s no longer a kid?

When she looks back will she say that I gave her the tools to succeed as she was or will she ask why I seemed so intent on changing who she was? 

How Far Are We Willing to Go to Change Behavior?

Yesterday, with this post and all of its big, scary questions still safely tucked away in my Drafts folder, I read an article about California’s ban on Gay Conversion Therapy for children under 18. For the blissfully uninitiated, GCT is the highly controversial and nearly universally condemned practice of attempting to change a person’s sexual orientation through some twisted version of psychotherapy. There is overwhelming evidence that the practice tends far more often to result in depression and suicidal ideation than heterosexualization (no, that’s not a word, but it’s as absurd as the whole concept.)

Just for context, let’s play a little game. Are you straight? If so, do you think that if I gave you aversion therapy – you know, like an electric shock every time I showed you a picture of heterosexual sex – that it might turn you gay? How about if I inundated you with photos of homosexual acts and rewarded you for showing arousal? No? What if I simply told you that your heterosexual feelings were wrong. That they didn’t conform (or that, if not society, then God, had a problem with you acting on them). That you could still BE gay, but you couldn’t ACT gay anymore. So what would happen then?

Well, according to story after story from those who have participated in this practice, what usually happens is that you either fail miserably at being what you’re not — OR — you ‘succeed’ and manage to live the life of someone you’re not. Which leads us back to the ‘overwhelming evidence that such therapy tends far more often to result in depression and suicidal ideation than heterosexualization.’

So what if you’re autistic? And I tell you that it’s okay to BE autistic but not to ACT autistic? Then what?

Is homosexual conversion therapy a perfect parallel to administering drugs for social impairments? God, no. Really, really far from it obviously. But do I think there’s a common lesson in them? Well, yeah, I do. Because when I read the second article, I found myself thinking immediately of the first.

So here I am, dragging this post kicking and screaming from the Drafts folder and out into the light of day.

I don’t have answers. I never claim to. I just have questions that I think we need to remember to ask.

I’ll end with this – based on my limited reading about Arbaclofen, I lean toward thinking that it’s likely a win. That it will indeed not just offer some relief to those who struggle to communicate, but at the same time hopefully give researchers vital information on how the process all works. But long before I’d give it to my own child, I’d have to do a LOT more research. And then I’d have to ask the big questions.

At what cost? 

And

What’s the REAL end game?

Thank you to Ari for making me think, forcing me to examine my approach and keeping me honest about what matters most.

Editor’s Note: This article was originally published in 2012 and has been updated with a new feature images and formatting.

Thank you to Jess Wilson of a diary of a mom for giving us permission to reblog this. Here is a link to the original article.

Inclusion Is All About Supports

Thaysa-Dan-Habib; an elementary school girl is sitting at her desk using a communication device with her classmates around her and a support teacher behind her. everyone is smiling

If you are not willing to differentiate instruction for the wide range of learners that you have, including students with autism, then you are in the wrong profession.

-Holly Prud’homme (General Education Teacher at Mape Wood Elementary in New Hampshire)

Are some students too hard to include in general education?

It has been my experience that the reason inclusive education fails is never because of the student; it fails because of lack of support or not the right kind of support. The following video, “Thaysa” made by Dan Habib  (Including SamuelWho Cares about Kelsey? and Intelligent Lives), is the perfect example of how a student with significant support needs is given what she requires to be successful in general education.

Is this example going to be the model for everyone? Of course not. The model is the willingness to try and listen to what each student is telling us. Inevitably, there are going to be students (and families) who don’t want to be included in general education. That is okay. Why would we want to force someone with a disability to do something that they don’t want to do? The point is that inclusive education should never be a fixed equation. You are X. Therefore you are put in X classroom with X amount of supports. When we reduce special education to a formula, we are not serving the unique needs of our students.

Inclusion Is a Mindset

Say it with me. Inclusion is a mindset. 

Now that you have said it, watch the video below. It is about 14 minutes long, and it highlights what Thaysa’s school has in place for her to be successful. Then, after you watch it, check out Dan’s other films. You won’t regret it.

Thaysa from Dan Habib on Vimeo.

Editor’s Note: This article was originally posted in 2012 and has been updated with a new featured image, formatting, and new post content. 

My Decision to Homeschool My Son With Autism

My Decision to Homeschool My Son With Autism

By Allison Trotter

I’ve been asked to write about our decision to homeschool Jackson, our middle school son with autism, a number of times.  People’s response falls into two camps: extremely skeptical or enthusiastically supportive.  There seems to be little gray area on this issue.  As a former high school teacher, I never thought twice about my ability to educate my child, so the negative response took me a bit off guard until I realized that many people are intimidated by the complexities of autism education, therefore believe it ought to be left to qualified professionals.

As I was brainstorming how to explain our decision to an audience of professional educators who support an inclusive approach to special education, I felt an analogy would be an interesting way to illustrate our situation.

In addition to autism education, I am also passionate about healthy living.  I have been researching and implementing healthy nutritional, dietary and environmental lifestyle choices for over a decade.  I am a huge Michael Pollan fan and have been an advocate for local food before it became the latest craze.  So, it only seems fitting to have the local organic family farm represent our family in this analogy.  On the flip side, let’s have BigAgra business (like a Tysons or Purdue) represent any institutional school system, public or private.

With this in mind, the scenario I present to you is this:  A BigAgra business acquires a small local organic family farm.  What challenges do you foresee in this merger?  What steps need to be taken by both parties to ensure a successful transition?  And, is there ever a time to dissolve this newly created partnership because the two farms are just not compatible?

Inclusion of a small organic family farm into a massive, government subsidized and regulated farm is going to be challenging for sure.  But there are steps that can be taken to respect the integrity of the local farm without compromising the requirements of the big agricultural machine.  Compromise must be made on both sides for this partnership to work, and if it can work, how wonderful for all parties involved!  The local farm gets huge exposure to new and innovative ideas and practices, and the large farm gets a refresher course on the value of individual care and attention to purity and quality of each morsel of food produced.

Sadly, my precious organic family farm, which I had tended with painstaking care every day for twelve long, hard years, with every ounce of heart and soul I had, got plowed over and salted without anyone ever consulting me. One day, it was there, and the next it was gone.

The decision to homeschool Jackson came very suddenly and very emphatically as we were sitting in an “emergency IEP” meeting six weeks into the start of middle school.  We had no idea he was having trouble until we got a letter in his binder requesting a meeting to address his behaviors and lack of academic progress.  We felt blindsided in the meeting because all the reports home up until that point seemed fine. During the meeting, it became very clear that this large public school of over 2,000 students that housed an autism center with over 220 students had only one system. In this system, every student had to conform to it, and unlike our excellent public elementary school, there was absolutely no room for individualization based on the needs of the child. We were essentially told, “that is how we do it here, and Jackson needs to learn to adapt because middle school is tough and he has to figure it out like everyone else.” All of a sudden we realized that our special needs son was a product and not a person.

My local organic family farm was being swallowed up by an agricultural machine that had no time or interest in our silly ideas or sustainable practices to ensure a healthy and vibrant future for not only our food but for our greater community.

So now, we homeschool, and we spend more time out and about in our city, meeting people, sharing our ideas, teaching tolerance and acceptance of diversity, spreading our passion for learning, and growing the highest quality human beings that we can with our small organic family farm of unique and awesome people.

Editor’s Note: This article was originally posted in 2012 and has been updated with a new featured image and formatting.

Allison Trotter is a former high school government and economics teacher and writes for her blog Homeschooling Autism. You can find her on Twitter and Facebook.

Getting Over the Biggest Obstacle to Inclusion

obstacle to inclusion; lego figurine standing close to the edge at the top of the empire state building in NYC

How do you get over the biggest obstacle to inclusion? In November of 2011, I wrote a blog post for SpecialEducationAdvisor.com about educators getting over the fear of inclusive education. Here is an excerpt.

Even under the best of circumstances, there is always a bit of trepidation when starting something new. Think about the first time you rode a bike, drove a car, your first kiss, or really anytime you have ever taken a risk. The thrill and terror of it all can be overwhelming. I liken this feeling to the first time I took one of my students (a boy with severe autism and challenging behaviors) and put him in a 4th grade general education classroom. It was my first teaching job, in a self-contained classroom for students with autism in California and I was challenged by one of my professors at Cal State University Fullerton to begin the process of including my students in general education. At this time, there was little support for inclusion at my school (not even for Art, Music or PE – mainly because we did not have those programs due to budget constraints). Even so, I believed it was the right thing to do and began trying to change the hearts and minds of my colleagues. It was not easy at first, but after explaining that I was not simply going to “dump” my students off in their class, they were definitely more receptive.

This tends to be the biggest fear of people who are opposed to a “full inclusion” model. There are different definitions of “full inclusion” but one I prefer is apparent when we talk about the idea of Least Restrictive Environment (LRE). What is the environment that will least hinder the student from being educated with their typically-developing peers while still accessing the general curriculum (what everyone is being taught) in a meaningful way? There is no one-size-fits-all approach to inclusion just like there is no one-size-fits-all approach to general education (no matter how hard we want there to be). But…I am getting ahead of myself. In regards to my 4th grader who was now going to be included into a Math block in general education, I began to feel the anxiety creep up in me as the day approached. Would he keep his challenging behaviors in check? Would the class accept him when he started to script movie lines? Would the general education teacher think I was crazy for putting her up to this?

Diffusing and answering the inevitable questions was the big key into alleviating everyone’s fear. I spoke to the class before we started and explained my student, while having some differences in the way he experienced the world, was still a 4th grade boy who liked movies, music and playing on the computer. He liked Math, which is why we decided this was the best time for him to join his peers. It was also important to take the uncomfortable questions of “why does he do this,” or “why does he do that,” and answer them with the utmost respect and dignity to their new classmate. Perhaps honest communication is the best way to gain his peers’ trust…kids are too smart and usually know when you are trying to put one over on them. Once we got that out of the way, acceptance was the easy part.

Inclusion, at its very heart is a noble cause because it brings dignity to human beings when it otherwise would separate those who need love the most. Fear may be an obstacle but it certainly is not an excuse.

Source: Special Education Advisor: Fear Factor – Getting over the biggest obstacle to inclusion

Photo Credit: clement127/Flickr

You Just Can’t Take Me Anywhere!

can't take me anywhere

My parents used to say, “We just can’t take you anywhere,” meaning I could not be trusted not to cause a “scene” – and for parents who valued appearances in society as they did, this was quite the denouncement.

It has only been four months since I emerged from extreme isolation and denial of my social difficulties – the way I dealt with it was by NOT dealing with it: staying isolated and alone, the way I like it. I honestly prefer to be alone, and, until recently assumed most autistics were like me.

NOT so. Even some of the most severely impacted are not as misanthropic as I; in fact, they are surprisingly affectionate. I am beginning to consider perhaps my hermit-like qualities are not even related to autism at all. However, the fact remains – I am still as averse to being with other people for more than an hour at a time, maximum. I simply do not LIKE them when I am required to be in their presence. They irritate me supremely and my hostility and aggression, when irritated, is still not completely under my control. I no longer profess to “hate” them as I did vehemently when younger (and before Buddhist training), but still resent any occasion where I must interact face to face, unless it is a structured activity with clear rules, like sporting activities or firefighting. One on one contact is preferable, as there are not as many variables to attend to, but I prefer digital and online communication – I express myself best there and do not get as frustrated, as I control the interaction and can step away when necessary when getting frustrated.

As a child and adult (up until 1999, when my last documented episode of public aggression occurred), I was extremely aggressive, and, for this reason, was placed in very restrictive settings where they could physically restrain me. I saw no reason not to be so violent until multiple arrests and beatings from the police forced me to re-evaluate my public lashing out. At that time, I discovered Buddhism and its practice of non-violence and rose to the challenge of changing my behavior. I was successful; however, my primary strategy was to limit my exposure to provocative situations, which meant not venturing into public except when I most others are not present- i.e., never being out in rush hour, going to an all – night supermarket at 4 AM, etc. This did not completely curb my physical and verbal assaultiveness – as recently as a few weeks ago I hit my support person as he was attempting to restrain me from engaging in another obnoxious behavior – disruptive yelling late at night. The difference is now I feel remorse and truly do not want to be this way.

Here is an article on aggression in ASD: Aggression in autism spectrum disorder: presentation and treatment options

The article above spends much time discussing antipsychotic medications, which have been tried on me, to no avail. First off, I am extremely sensitive to the neurological side effects such as Parkinsonianism/Extra Pyramidal Symptoms. My diaphragm seizes up, and I cannot move the muscles needed to breathe. This makes antipsychotics potentially deadly for me. They also did not ameliorate any of my behavior issues, and since I do not have a thought disorder (schizophrenia), they are useless and harmful for me. Ritalin and the stimulants, which I was on for many years, also do not help in the long run. Neither do any of the other classes of drugs and, believe me, I have been on them all. Buddhist practice and the willingness to change are the only things which have worked for me, and for that I am grateful.

Thank you, Autistry Studios, for helping me seek resources which may help with self-control, like this one:

aggression2

It may seem simplistic, but I have never attempted anything like this. Only the challenge of following the Buddhist precepts has inspired me to try. When others were trying to control me, I resisted strenuously -and my will is incredibly strong.

I am doing better regarding aggression, but have a long way to go – had I not ventured out on those two days I may still be under the illusion I now have it all under control.

On the bright side – I no longer fight with strangers – nearly all aggression is verbal now, and even that is infrequent as I know my triggers and usually avoid them. I also did not wear my weighted vest, which DOES help calm me -and both days I FORGOT MY SQUISHIES! It is remarkable how much these items calm me. It is also remarkable how often I forget this.

As far as lashing out at my support guy – I AM sorry, and even that episode was minor.

Photo Credit: Ben Seidelman/Flickr

Source:  Just Can’t Take Me Anywhere! – Autistry And Me

I am Christian Espicha, an adult woman with autism. Though diagnosed as a young child with autism, partly because I also possess a genius IQ, I did not receive appropriate services until recently when I became a client at Autistry Studios in San Rafael, CA. Recently, at age 45, I was the oldest member of the Humboldt County Structure Firefighting Academy to graduate. Also, I completed EMT training and worked as a firefighter/EMT in Trinity County, California. I performed, with my fellow firefighters, mountain rescues, and recoveries assisted the Forest Service with fires in the Trinity National Forest and assisted with water rescues/recoveries on the Trinity River. I am also a writer and artist. See my website at https://www.autistryandme.wordpress.com and autistryandme on Facebook and follow me @Screenshotaut on Twitter.

 

My Life with Autism: A Speech by Jordan White

jordan white; young white male wearing glasses sitting in front of a computer with the Kennesaw State University logo on it


My Life with Autism – A Speech by Jordan White… by sampsoninc916

A friend of mine spoke to our school staff (Kincaid Elementary School – Marietta, GA) about his life with autism and being included in general education during Exceptional Children Week. This video was from April 2011. The complete transcript is provided below.

Since the publication of this video, Jordan has graduated from Kennesaw State University (KSU) with a degree in computer science and is currently employed in the field of technology. You can read more about Jordan from the article “No Boundaries” published on the KSU website.

My Life with Autism – A Speech by Jordan White and Family

Tim: I just want to echo what Jodie said, yesterday was awesome the assembly was mind blowing so that was really, really a special time. Today we have Jordan along with David and Patty White they are our special quest David is friend of mine and we just started talking on day about Jordan and I was like I really want our staff to hear his story. So I thought the best kind of way first of all I want Jordan to know our staff is super nice and they’re going to smile and they are going to be completely attentive to what you are about to say you know so no worries we are all friends here. And also how I wanted to set it up I kind of thought David and Patty can kind of ask Jordan some questions his experience growing up in Cobb County schools kind of his journey towards where he is now Tennessee State University and so we’ll kind of start with that and if I feel like you know I want to add some questions I can and then if we have time we’ll open up for questions for everyone else. So why don’t David and Patty why don’t you, you know the beginning I suppose.

Patty: Introduce yourself Jordan.

Jordan: Hello

Audience: Hi

Jordan: My name is Jordan White Noel White and I was born on September 16th 1991 in Orlando Florida and I was born autistic, when my parents had me they never really knew I was autistic until I turned 3 or 2 years old and the doctors soon found out I was autistic and had trouble learning to speak learn how to socialise learning as well as learning how to be the best I could possibly be and kind of way for me no one exactly no one really understood autism and then again no one understands it today. So that’s the best choice for them to put me in a place where in a place where regular students that if I learned how to be like regular students I might be able to have a chance to succeed so they put me in a preschool and I choked and so this include dong other activities other students did, yeah I sometimes had problems in that class like the fact that I really wanted to make precision cuts on photographs making trying to write that well sometimes even my dad would come into the class room and show me some pictures so I could identify them and he actually, my mom and dad too their time to get a bunch of therapists to really help me learn so I would be prepared for the next step in the school and I think there was flash cards lean how to there was an audio test where I had to listen to a tape and stuff and I pointed to this what the sound sounds like where the sound came from  and it kind of evolve in those days we lived in  Alabama Henson, Alabama and so how for some reason we decided to move to a different city in Alabama so we moved to Huntsville. In Huntsville I chose a school well mom and dad chose a school, they chose a school the Tower of Light school. One time in one of those classes I looked at a year book and found that the school was built in the 50’s and I had no connect with that era so anyway they took they gave me classes to go to and basically it’s not like periods but like 1st period, 2nd period, 3rd period that school what we had was one class and sometimes you would walk in a line or go to another class which taught specific subjects and they would dismiss me from dismiss me at 5:30 and we would kind of walk in line and we would go out to the parking lot, the carpool where mom was waiting. Well my first classroom from kindergarten was with Miss Pool and she was sort of realized that I was autistic so the best thing she could possible do was to take some advice from my parents and they worked out some and I think they must have worked out a period of system where I a green light for good behaviour and red light for bad behaviour and basically if I was in the green light zone then I might be able to actually be improving, if I was in the red light zone maybe bad behaviour.

Patty: Can I stop you on second for a minute? So Jordan has gotten to kindergarten and he was diagnosed at 3. We started pouring all of our resources into therapies, speech, occupational therapy everything because it’s our impression with autism if you don’t teach them how to speak and they didn’t learn how to interact by the time they were 5 or 6 you know their brain started changing the way it formed and such so we really poured a lot into that and it made a huge difference. When he was 4 he started talking and I was going to conventions all over the place trying to learn about autism because it was kind of new 20years ago not nearly as common and well understood as it is today. He ended up going into regular included classrooms at kindergarten he had already taught himself how to read, recite his alphabet, read all his patterns and all his colours with puzzles he went crazy. But his IQ test 79 I think he didn’t test well or communicate or anything but he was brilliant and they recognized that there was great potential so they did go ahead and let him be fully included, he was pulled out to resource or special ED or (unclear 8:42) for social skills, speech training and facial training but academically he was always included because he did really well with all of that part. He was like the first student who had gone through who was included for academics and pulled out for other stuff which kind of the opposite of what normally happens but he was fully included as a kinder garner and started doing great. But it was difficult for the teacher in a lot of ways the team worked between the parents, the resource director, special authority there and the kid creating systems that we understood normally worked you know that communication, interaction was huge in making it successful and bring home what they were doing and reinforce it. I think is one of the things that was such a huge success between the parents and the teachers willing to try what we suggested because we knew our kid better than anybody else and we had been working with him for years and kind of had ideas what helped him as far as motivate him. If they listened to what we would say it would make their lives a lot easier and helped him to be so successful, we kept that partnership going even now he at Tennessee State and my husband is an adjunct professor and he communicated with the professors so that if there is questions or how do we tell him something or you know discuss with him they even now they’ll discuss it really patiently for the success for the kid. I think it helped Jordan that his parents were on board with it, we were not in denial in any way and we were going to fix this problem our mind set primarily was that he lives in a regular world and he’s got to interact with that regular world and it’s not going to modify for him necessarily so we do as much as we can to teach him to be who he is in that world. Because he’s going to live in it and hopefully be independent and successful in that world so we want to modify what we can and what’s reasonable but we also want him to have to modify and adjust to the world that he was placed in so

David: Let me ask you a quick question about elementary school. Do you remember anybody who was special in elementary school?

Jordan: Of course I do, in 2nd grade there were 2 girls who (unclear 11:13)and Melissa but most of the time I most of the time there was this kid named Hogan not to be mistaken with Hulk Hogan but he was a sort of a big one I must say. Well what happened was he actually was there for me he seemed to be somewhat like my protector in there like he kind of protected me from bullying. I never had one bully in all my life I was pretty amazed because I never understood why a bully represented the media.

David: Who was your favourite teacher in elementary school do you remember ant name now?

Jordan: Well

David: Was it Miss Brannon

Jordan: I love Miss Brannon she was a wonderful woman she was the resource director. She let me do many things in that class, well she kind of taught me stuff about my body and how to manage it and al well as curtsied and stuff and I was allowed to talk about my interest and she helped me a bit with learning some words and stuff so basically she let me play a few games involving teachings of words and maths so I may be able to understand better about words. There was this word game where I had to collect stuff a slide scroll if you know those from video game history and there is this one game involving me as a train and the limit was 999 basically a numbers train and you press number and it would just go to that place that’s on the train track.

Patty: Jordon has always been good with numbers and one of our discipline system even when he was in 2nd, 1st, 2nd, 3rd grade was for him to collects points and when he got so many points he would get to go buy one of him favourite Thomas Tank characters or something like that he would keep up with them in his head so he and he could always tell exactly and  it was like a 100 points system not just you know a few points but he would know when it was 72 he always knew how many gains or loss that’s 2 points we take it away if you are not going to settle down right now. And because he’s black and white honest, it’s right or it’s wrong and he approaches the world that way he couldn’t lie about whether he loss points or not. It worked because he would have to be honest just because that’s what autism is. Its’ what it is just yes or its no, it’s black or its white; it’s not that grey area. The resource teacher was very good at using his strengths playing to those playing to his interests in trying to create the motivating system that they used and that was huge and using peers like he said his friends. They always try to sit him by in every classroom he always has one or two little nurturing girls that want to help or want to mother somebody and that’s where Jordan would be sitting and they love him to death and keep him on track whatever. There is always some friends like that abound you (crosstalk-well yeah) even in high school he had those friends..

David: That’s even gone all the way up to high school and Tennessee State as well students have always kind of taken to Jordan they understand that he’s in class he trying, he’s working really hard and

Patty: They usually respect his intelligence and always he’s going to help them and if he’s on their team they are going to get all the answers right then they just work with him, work with him and the teacher has spun it as a positive thing and put that emphasis on the child and the student in the room take it that way and they learn from the situation and they grow learning how to deal with this person who is different from them. And the rate autism is growing in our society one out of hundred and ten I think it is now boys for sure, they are going to have to deal with a lot of them and they are smart like Jordan the ones that are going to come along and they are all starting to come to college and this first big wave they are going to get degrees they are going to be out in the world place with these kids and they need to know how  to interact with then if they had them all through elementary school they would be much better people when they get to young adulthood.

David: So at this point Jordan graduated with honours from (unclear16:46) high school so he still has a scholarship due (crosstalk-yeah) and what did you graduate in?

Jordan: Computer Science and class one and two film unit one and two basically

David: Go ahead tell them about you’re characters in your film.

Patty: This involves movies, movies trivia, producer, actors all their names, what dates they came out

Jordan: Well what happens is that you know while I was making movies I was trying to add characters of my own I mean comparing with doing dumb stuff on YouTube I was trying to actually tell a story. Basically there were certain characters that I wanted to use to tell that story and help that story along of course I wasn’t exactly go at first but then I always jump at the top and every film I made I tried to improve and basically I’m at the point where I can direct character by a certain motivation actually to be the best he can be to. Basically there’s one character of mine Samson who looks a lot like me and

Patty: When Jordon was about seven we felt that he was getting too focused on TV and stuff so we cancelled TV in our house so he wasn’t, he has 2 brothers and sisters and of course they were all divested but we cancelled the TV and his way of kind of dealing with it was to start creating his own shows and characters (crosstalk-universe) his own universe basically where we were all in. Not that he retreated into it but he played with it and he drew it on paper and he would have pages he’d flip through and in his mind it was like different screens he was looking at, it was just really fascinating. But he kept those characters added to them and made (unclear 19:12) maybe he would create them on Popsicle sticks and move them around and take pictures of them and edit movies and he just started his second, what is your paper you just did?

Jordon: The farm project

Patty: Yeah or his English composition class he had the choice of doing it as a multimedia or a written paper and he is extremely good with sentence structure and his spelling and grammar is excellent. But he chose multimedia so he just made a little movie where he pulled in movie clips and all kinds of stuff

Jordon: I give credit to those people who almost believed because they would come up as honest

Patty: And that’s the right thing to do give credit for the work, give them credit for it

Jordon: And well

Patty: Just a second

Presenter: So Jordon this is for earlier, what did you find as you got older Jordon and you started going into middle school and high school was there any point where it became really hard to be in regular you know regular classes? Like did it get harder as you got older?

Jordon: Yes it did basically I was a bit stressed out by the fact that I was getting a little more look than usual and the fact analyse literature and I also had to write essay that point to the person specifications about, I’m not exactly that I don’t know if I’m actually good at writing essays I wish I am but I don’t. I’m good at stories and personal I remember those times.

Patty: He wants to write what he wants to write always.

David: we had a little, little problem in 10th grade he was in private school and we had some anger issues about being too good with the computer and so he ended up missing a lot of school and cancelled them out the first test that you took and I believe your history class (unclear 21:36) remember and you sat together with people who were watching over you and he twelve students, here’s the best grade

Patty: Jordon had the top grade in (unclear 21:50) class. Jordon he went to public school starting in 3k with the 3 year old class room, he was put in a room with a couple of fairly profound kids when he was 3 and we lived in Florida.  And we moved to Alabama and they wanted to do it again to be in a room with all ages of kids you know lining up pencils not that that’s bad but it was a vast array of ages they were teaching some over here to use washing machines and they had little four old Jordon you know in the same room. So we were not pleased with that so we put him in our church preschool and provided an aid to be him so that, that would be manageable and actually the public school would pay for half of it because we kind of pushed that issue some. So he did that and he started regular kindergarten with public school too at the end of 4th grade when we moved to this town from small Alabama to big city and these great big school with so many people this school seems to me to feel very much like the little school he was in was a neighbourhood school in a town but being on a smaller scale. There were 3 of each grade instead of probably 10 you know having. You know some of these schools around here are so huge but we were just not comfortable with him going right in at the middle of the year and we started home schooling and he stayed home and he being the you know the right and wrong kind of guy he is I would just give him a list and he would just check, the perfect home school student

David: (Unclear23:21) ten fifteen

Patty: Yeah but he knew he wasn’t getting his social interaction and I wasn’t trained in special Ed or anything so we knew he needed to be with kids and be forced to be regular in the world and not that home school aren’t but they are isolated and his biggest need is social skills and so that’s why we had to have that and my other son was at North Park Christian at the time so we talked to them and they were willing to give it a try probationary from one year to the next and he stayed through to the middle of10th grade that’s when he came to (unclear 23:56) and that was a fabulous move the best we were kind of afraid to do it because still a little bit sheltered about it but it was a fabulous experience and excellent support and that was the first time he had ever had peer coach and when he was in high school public school they provided the peer coach. Because he was in advance classes they were pushing the limits with all the other students and he could do the work but behaviourally he was sometimes distracting and so then he was beginning to get up and walk the halls and they couldn’t just let him do that without an aid and you know some of those kind of things and to reach over and give him the stress ball to squeeze or whatever needed to happen

David: So he was so on one hand he was (unclear 24:37) and on one hand he was (unclear 24:38) a real difficult thing for a (unclear 24:42) because that’s rare to have that combination so they worked greatly with us and I can’t say enough about (unclear 24:51) they did a great job with Jordan and Tennessee State has been incredible with their flexibility the special services they have they get it. The wave of autistic kids coming through it’s not going to stop and it’s going to benefit the normal kids because they are going to manage kids like this someday. Microsoft they are already starting autistics to do coding some of these bigger companies understand where their strength are so  you’re likely going to managing them in the future and they will be in your communities as well.

Jordan: Please I sort of feel that I’m been sort of speaking too much

Patty: Maybe they want to ask you some questions.

Jordan: Okay, you can ask me some questions, oh yeah.

Audience: Jordan when did you know that you had autism?

Jordan: Well I think my parents told me.

David: But when did you realize it Jordan?

Jordan: I think I must, I think I was about maybe 99 or 2000

Patty: How old were you?

Jordan: About eight or nine.

Audience: Did that change things for you?

Jordan: A little I think but what happened was I seemed to try to understand it, yeah it might have changed things a bit.

Patty: I don’t think he really spoke it and said I’m having trouble with this I’m autistic and so that’s why I’m having a difficult time with till I would say the last 2 years. He didn’t start using that as an explanation for other people to understand why he was stressed out at that moment or anything like that. But it’s been very helpful for people around him and we felt from the beginning that it was very helpful to in every situation he’s been in to for all the people around to understand what was going on so when he’d show up at a church or show up a birthday party to say you know it must have been (unclear 27:22). He didn’t have a lot of friends because it was awkward but to go in and say Jordan is autistic and it’s a positive thing because of that he can do this and he can do that and this is wonderful but I don’t even know this and that and the other and we are wide open to chatting about it you know it’s an open door situation but it helps you to know and almost every time he’d start in a class and a couple days into the new year or new situation we would you know go out and have a special airing for Jordan while the teacher would explain to the other students with our permission so that they understood too you know I just felt that was always best for him and for all the people involved to understand what was going on. But yeah I think you started talking about it recently, say mom how much.

Jordan: Of course

Audience: Can you tell us what when you were in school what was the hardest thing for you and what was the easiest thing for you?

Jordan: Well when I went to school?

Audience: Yes

Jordan:  Okay well one of the hardest things for me when I went to school was trying to dealt with some of the extreme social situations, the you know crazy stuff happening and the also the changes in the schedule heck the lunch time was sometimes noisy. The one about changing the schedule I might have freaked out so other things that was hard was sometimes getting frustrated about doing things right and things not going my way. Of course one time I lunch wasn’t what I want so I kind of took that lunch sheet and crossed out the (unclear 29:51) and changed it to (crosstalk-the easiest?)Maybe the easiest thing was the good times like when I actually did stuff that I knew I could do and actually improving on my skills and hanging out with these people who loved me and they were trying their best to take care of me as well as and show me which like possible do to make things to keep me satisfied and on field day. Field day was kind of a good day because I would be getting some good treats especially (unclear 31:09) yeah some popcorn and pizza

Patty: He loves to eat, didn’t always love to eat very, very picky with his food from a young child and then I guess from around 4 or 5 years old we started deciding he could live off of hamburgers and chicken nuggets for the rest of his life and had to force entry of new foods and we picked things that was common in life as opposed to what would be good for him because we wanted a successful better kid so we picked pizza, we picked hot dogs we picked stuff that would be in a social situation he would need to be able to eat spaghetti whatever would be served mostly likely when he was out in public and try to teach him how to learn to eat all that stuff  and  he (unclear 32:03)

David: So Jordan it’s all most time to get going so tell them thank you.

Jordan: Well thank you for having me and I wish you in your education and I also thank you for helping to improve this world for people like me and making sure that these kids do their absolute best in the future.

Tim: Just one more minute before everyone leaves behind where Gail where Sidney sits is a bookcase and on that bookcase are books about exceptional children, gifted kids, kids with autism and we have the  Temple Grandin movie it’s like your own blockbuster script it’s great. There are a lot of movies and I try to buy movies that are applicable you know to our kids but they are just really good so if you haven’t seen it please check it out it’s there for us and the parents. There is also a movies called Including Samuel it’s a documentary about a film maker who son has cerebral palsy among things and they live in New Hampshire and him being fully involved in general education he is 4 or 5 years old in this film. There are a couple of books, Why Bright Kids Get Poor Grades, Being Smart About Gifted Children, there are probably almost half the books that are over there about gifted education because we don’t want to forget about our target kids and also Quick Guide To Inclusion this is a new book just really simple one kind of page ideas of how to make inclusion work in our schools in special grade. So you know we’ve got the bulletin board over there on the other side I’ve seen some people posting stuff and really excited about that, we have the resource library these things are here for all of us to take advantage so we can you know I mean Kincaid is just an awesome place already but I want to make sure everyone feels equipped and you know ready to take the challenge on for helping our kids and doing the best we can, right Jordan?

Jordan: Yeah

Tim: Alright so I think that all I have so

Forum Facilitator: I’d like to thank let’s give a round of applause so thank you for coming in and talking to our staff and thank you Tim for taking the time to organizing it. It was very motivating and at this time we are finished adjourned and don’t forget we have some cookies over here that Tim brought for us.

End of Transcript

Photo Credit: KSU

 

Autistic: On the Outside Looking In

Steve

This post was written by a friend of mine, Steve Summers. He has given me permission to repost this here.

Do you know how it feels to be treated like an outsider? I do. I am Autistic. Some people seem to think that as a result of being Autistic, I am in my own little world and that I won’t notice if they leave me out or ignore me. They are wrong. I do notice it and I don’t like being treated as an outcast or outsider.

Do you know how it feels to be excluded? I do. When I was a kid I would hear the other kids talking about parties or events that I wasn’t invited to. As an adult, I still have people around me doing the same thing. They talk about how they had some fun, did some event or get together that I was never invited to do. Not too long ago someone was talking about how they took an acquaintance out on their boat on a fishing trip and even though I have known them much longer, I have never been invited to go with them. Is it because I am Autistic? Do they care that I feel ignored and excluded?

Do you know how it feels when someone offers to do something nice for you and then they don’t ever get around to doing it? I do. I know because that happens to me.

Do you know how it feels to be second guessing yourself even for seemingly small issues? I do. For example, I recently wished someone a happy birthday on their Facebook timeline. When I went back to their timeline a day or two later my greeting was hidden away. Why would they do that? Is it because they don’t want their friends see that they have an Autistic friend? Are they ashamed to be my friend? I don’t know, but, it seems that way to me.

Do you know how it feels to have people simply stop contacting you? I do. I sometimes have friends and acquaintances “fade away” from interacting with me without any explanations. They simply stop talking, calling, commenting or posting. When asked about it they say nothing is wrong, but they don’t change anything.

Do you know how it feels to have people get offended over things that you don’t have any control over? I do. For example, I have some mild issues with face blindness (prosopagnosia) which is somewhat common among people with autism spectrum conditions. I sometimes have difficulties with recognizing people if they are in an unexpected place or in a place where I haven’t run into them before. People expect you to say, “Hello” and they get offended if you walk past them without saying anything. Along with face blindness is a difficulty in remembering names. I prefer to simply say “Good morning” or “Hello” without including a person’s name because I don’t want to chance saying the wrong name. Some people insist on using names and will be offended if you rarely say their name. They don’t understand that I don’t mean any offence by not recognizing them or forgetting their name. I don’t do it on purpose. Please, don’t be offended if I seem like I don’t know you. Please, if you say something like, “Hello” and if I look confused, add, “I am _____ from _____ we met at the _____.”

Some other things Autistic people sometimes do may cause inadvertent offense to the ignorant. Here is a partial list of some Autistic characteristics that that may confuse the ignorant and lead to rejection: 1. Lack of eye contact. 2. Poor social skills. 3. Literal thinking. 4. Fidgeting or stimming.

So why do some people who are part of the neuromajority exclude Autistic people? Most likely because they are ignorant of the facts of Autism and due to their ignorance they behave as neurobigots. They may exhibit either conscious or sub-conscious neurobigotry, but, the results are the same, exclusion of the Autistic. People who are ignorant tend to avoid and shun people who are “different” or that they don’t understand. If people don’t educate themselves on what to expect from the Autistic, they may try to avoid us. Ignorance really does hurt us. Being different is not wrong. We shouldn’t be excluded for our differences.

Try to put yourself in my shoes and see how it feels to be treated like someone who is an outsider. Try to understand that I do notice these things and I don’t like being ignored and excluded. Please be considerate and inclusive. Thank you.

———

Read more about face blindness here: http://autism.about.com/od/SymptomsofAutism/f/What-Is-Face-Blindness-Prosopagnosia-In-Autism.htm

I was diagnosed with Asperger Syndrome (part of the Autism Spectrum) as an adult. I was diagnosed following my 11-year-old son’s diagnosis with Aspergers. I am happy to have my diagnosis. It is like a light was turned on that illuminated my entire life in a new way. Now I understand why I never really ‘fit in.’ It is like having a huge weight lifted off of my shoulders to have my diagnosis.
I don’t feel that people should make divisions between parts of the Autism Spectrum. I am Autistic and I want to work to make the world a better, more understanding and accepting place for all Autistic people. We need to work together for the benefit of all on the Autism Spectrum.

A Place for Parents: Autistics and Allies

Sticker of two people holding hands.

By Larkin Taylor-Parker

Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.

The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.

Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.

The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.

As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.

*non-autistic

Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image. 

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Striving for Community as a God-Loving Aspie

man looking up towards heaven thinking about god

By Timotheus “Pharaoh” Gordon

Being autistic and striving to be a Christian is very rigorous at times, especially if there are little resources or examples for such community.

I’ve been practicing Christianity for about a year and two months. It may have been a difficult year of struggles; heck I still have to work on (e.g., having MY OWN convictions that are based on the Bible, not solely word-of-mouth). But I’m growing more convinced that through the power of the Trinity, even autistic people can change the world as Jesus did.

I love studying the bible, praying for people, helping out people, going to mission trips (to take pictures of those experiences), and hanging out.  Sometimes, I would blog about my faith on my website.

Yet, I don’t really feel like a member of the church at times. I interact with people, but not as well in huge crowds (so many people and too noisy). It seems like some would see this as not wanting to fellowship when it’s only part of my autism. I feel like very few of my peers understand my challenges with fellowshipping. I also struggle with emotional meanings behind certain passages.

I’m scared even more when it appears that I’m alone in the fight to stick with Christianity as an autistic person.  I met two boys in a Birmingham church who are autistic, but I’ve yet to find autistic adults who are Christian. How can I be an autistic Christian if there is lack of adequate examples of such persons out there?

I believe that first step in seeing more autistic Christians (especially those who are living independently and are verbal) is to provide resources that could help them grow in the faith. The catch is that resources have to come from someone or an entity who fully understands autistic Christians’ hardships in the world. Resources could even come from a person in the autistic spectrum who been the faith for a long time (e.g., at least 2 years). Providing spiritual guidance from the verbal, independent autistic’s point of view is more beneficial than turning to a place or someone with limited/stereotypical knowledge of the condition.

Meanwhile, more Christians that are autistic should network with each other and share their testimonies to non-autistic Christians. That will inspire many people and convince of how God could work through anyone.

With those, I would hope to see news of more autistic Christians making a difference in people’s lives and less of parent’s woes with raising an autistic child in a Christian household.

(sidebar) Links related to Autistic Christians:

Autism Society (Religion and Autism): http://www.autism-society.org/living-with-autism/family-issues/religion-and-autism.html

Books and Resources on Religion, Spirituality, and Moral Development: http://www.neurodiversity.com/religion.html

Christianity and Autism Forum: http://www.aspiesforfreedom.com/showthread.php?tid=21631

James Tuttle (autism advocate, political advocate, and commentator on spiritual issues): https://www.facebook.com/pages/James-Tuttle/23053891623

Spectrum Ministries: http://www.facebook.com/pages/Spectrum-Ministires

Photo Credit: Carlos Solares/Flickr

Editor’s Note: This post was originally published in 2012 and has been edited for clarity, has a new author bio and has as a new featured image.

Timotheus GordonBorn and raised on the south side of Chicago, Timotheus “Pharaoh” Gordon has loved the power of writing since 3rd grade when he copied love poems and read history literature in his free time. He got married to poetry in 2003 after turning in a humorous poem on his daily routine for a homework assignment. Writing, especially poetry, also helped him develop a voice as an African-American male with autism.
He is a freelance writer and blogger specializing in autism acceptance, social commentary, sports, cosplay, and comic/anime conventions. He is published in online publications such as Football.com, Creative Loafing Atlanta, and Yahoo Contributor Network. In addition, he takes event pictures at anime/comic conventions, rallies, college events, class reunions, 5K races, and church functions. Along with those two professions,  am currently an independent marketing representative, where I utilize social media and word-of-mouth to provide essential productions and show people how they can gain financial independence. Connect with him on Twitter @TimotheusGordon or his other social media outlets.

Why Autism Speaks Hurts Us

a collection of blue puzzles pieces with one red piece in the midst of them

By Amy Sequenzia

Autism Speaks…Are You Listening?

When I was little and started to type, I was saying things like “life with autism is insanity”.  I didn’t recognize autism as an important part of who I am and I was only repeating what I heard. My parents were supportive of my typing and loved me deeply. But they also were told that I could never be happy as long as I “had” autism. The efforts, “experts” said, from families and advocates, should be towards supporting research to find a cure.

That was a long time ago. At some point in my life, I started thinking for myself and accepting autism as the most important part of my personality. I am autistic and that’s who I am. It wasn’t easy and it was bumpy. But if today I am accepted by a growing number of people, if more people read and value what I write, it is because I accepted myself as I am. And I am a proud autistic woman!

Saying Autism Needs to Be Defeated Sends the Wrong Message

I do not have the advocacy organizations of my younger years to thank for that. Back then, they proclaimed in their names that they would “defeat” and “cure” autism – NOW!  They were saying that I had to be defeated, cured from a terrible condition, exterminated. They never paused to think that I, and other autistics, did not really want to be discarded as undesirable. And it is scary when people keep saying that we don’t deserve to be here.

Today things seem to be even worse. Even for me, although I have found my place and my voice. My family and close friends have accepted me as autistic, but the challenges I face are made worse by the negativity Autism Speaks and their followers link with being autistic.  Things are worse because those organizations that once wanted to see me gone, today follow the lead of Autism Speaks.

Most of the Money Raised Goes to Research Not Services

Autism Speaks is a powerful organization, with support of many celebrities and easy media access. I believe most of the celebrities that help making Autism Speaks so recognizable don’t have an understanding of what autism is. They probably want to help and they buy into the picture of despair spread by Autism Speaks.

The same is true for the thousands of people going to “autism walks” and donating money to Autism Speaks. They don’t know, or refuse to acknowledge, that the message they are supporting is that society should fear and segregate their children; they don’t know, or refuse to acknowledge, that all the money raised will not be used to help their children with education, services or accommodations that can make navigate the world a little easier for their children; they don’t know, or refuse to acknowledge, that a lot of the money is used to advertise their children as burdens, as people society should shun, isolate and eventually eliminate.

I Am Disabled and Different, but Not Less

We, autistics, know this well and, with our allies, have been very vocal about the damages Autism Speaks is doing to our lives and to our future.  I keep thinking about my life. Accepting myself was a difficult and long process. My self-esteem was low and I did not have consistent support. People in my life were torn between believing the messages of despair and gloom, and seeing me as a whole person – disabled and different, but not less.

Eventually, we were able to move forward in our process and this is my point: I cannot avoid thinking that it could have been easier, that time would not have been lost and that I could have had many opportunities – now gone – in my life if my family had been offered more support instead of being told I was too defective and that my only chance to be a “real person” was if I could be fixed.

We Need to Cure False Assumptions About Autism

But I am here today, speaking out, despite the predictions of a lesser life. If organizations like Autism Speaks were really thinking about us, they would stop spreading fear of autism and they would start talking to us, the only true experts on autism. They would then help us achieve the goal to cure what really needs to be cured: the false assumptions of what life as an autistic person is, what life with an autistic person is.

And I mean talking to all of us. I for example, am one of the adults Autism Speaks considers helpless and a burden to society. I am said to be a tragedy for my family, although I am not and Autism Speaks cannot tell my family how they should feel about me. I can give the so-called “experts” valuable information about how to better help me with the difficulties I face.

Families Need a Message of Hope Not Despair

Autism Speaks hurts us when families of newly diagnosed autistic children have their energy drained by the negative messages they get from that organization. The fear and the bleak future is all they get. They start resenting the child in front of them and they start hoping for a “better”, “non-defective” child. They waste their energy trying to fix what is not broken, what is simply different. And the autistic individuals are silenced, with an uneasy feeling that we are disappointing to the people we love, that no matter how much we try, we will never be good enough, ever.

If the messages and information they get come from Autism Speaks, they never see autistics that are happy, accomplished, successful and thriving, as autistics, in our own way; or the families that are not suffering, despairing, afraid of the future or depressed because a child is autistic; they don’t see that, fear replaced by acceptance, no longer makes sense. When more families accept autism, they work for the rights of every autistic. And this is a good goal.

We Can All Thrive in Our Own Way

Autism Speaks hurts us when they use all their resources trying to make us look like not good enough for society. We need to fight for acceptance, so that families, allies, educators and policy makers can re-direct their energy to what is uniquely important to each autistic child and adult, so that we can all thrive, in our own pace, in our own way.

No burden, no tragedy, no fear, no despair. Those concepts come from Autism Speaks, an organization that never listened to autistics, and is not interested in listening to us. They don’t have the insight, the expertise and ultimately, the right to direct the conversation about autism. This right belongs to us and we are the only ones who can decide who our allies are, who can speak on our behalf.

Editor’s Note: This post was originally written in 2012 and has been updated with a new featured image, headings and author bio. 

Photo Credit: Flickr/rawdonfox

Amy_Sequenzia_150x150Amy Sequenzia blogs regularly for Ollibean and Autism Women’s Network.

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