Divided

Not for the first time, the Autism community is divided. In a widely publicized case, a mother attempted to murder her daughter and then commit suicide. It didn’t go as planned and the mother is now in jail while the daughter is home with her father and two siblings. Apparently, the child’s behavior drove the mother to this act. The television show that interviewed the mother showed the same video of the daughter hitting the mother over and over. It seemed like that was the only footage available. There were no pictures of the happy times, although if you search YouTube you can find several videos of this nature. The television show played right into the belief that anger and violence are the number one characteristics of people with Autism.

It’s not that way. It’s never been that way. But like all stories, it’s easier to grab attention by pointing out the most egregious parts of a story. The public’s perception of Autism needs to change.

I speak from many viewpoints. I am Autistic. I have 2 children who are Autistic. I am a special needs teacher who worked in classrooms dedicated to Autism. I also taught in classrooms dedicated to behaviorally challenged kids. And I taught in a resource classroom. I’ve taught grades K-21. I’m 46 years old. My kids are now young adults. So yes, I have a certain amount of perspective.

I’ve been hit by students. Punched. Bit. A dislocated shoulder here, a broken foot there and throw in a MRSA infection for good measure. I’ve had parents refuse to answer their phone during the school day because they just needed a break. I get that living with an individual with any disability is challenging. People with more challenges are more challenging to live with.

But, does that give me the right, or even moral authority, to murder someone?

The discussion on social media is all about how the mother needed more support. How she clearly isn’t in her right mind. And how her daughter’s behaviors put here in this position. Parents of children with severe Autism are making the mother out to be a victim. I guess you can put it that way. She is a victim of society, of people wanting to believe nothing like this could ever happen in their backyard. Of a society that, despite cries for help, turned a deaf ear.

But the daughter had no say in this. Her disability is such that her communication is physical. She can’t speak. She can’t tell anyone her story. She certainly didn’t tell her mother she wanted to die.

Division. Autism is a spectrum disorder. The impairments vary wildly. It is usually parents of children who are severely affected who want cures. Who send virtual hugs to a mother who thinks murder is okay. They’ve been there, they understand. No one else can possibly understand their lives, so they must sympathize.

And then there’s the rest of us. High enough functioning to fit, sort of, in society. Slow, quirky, anxious. But we’re managing. And many of us do not want to be cured. Many of us see Autism as an integral part of our personalities. It’s in our character. After living with Autism for 40+ years, I wouldn’t know what to do if it suddenly disappeared.

The face of Autism does NOT exist. We look just like you. We’re not monsters or mass murderers. We’re your friends, neighbors and co-workers.

We’re also members of your community, regardless of how we function or communicate. Years of hiding and denying that people with moderate to severe disabilities even exist has created an environment where non-disabled people are shocked by disability. Then they latch on to the “normal” aspect and minimize the damage caused by trying to fix something that is innate in an individual.

Yes, we need more services. Yes, we need more support. But most of all, we need acceptance.

You knew me as a child and called me an introvert. You knew me as teenager and called me quirky. You knew me as a young adult and called me weird. You knew me as a co-worker and called me eccentric. You know me as an adult and I know there’s room for all of us.

Less Than

All around the world, people are determined to be less than human. Women and girls are treated as property to be sold. Or killed. Ethnic minorities are annihilated. Groups are literally clawing their way into power so they can dictate how others may live. There is always someone who is seen as less than deserving.

Those are examples that I see in the news. They are distant. Yes, I suffer from NIMBY syndrome sometimes. But if you recognize the name Malala, you know that these atrocities are happening…daily.

In my own backyard, today marks a day of shame. Most of you have probably never heard of Issy Stapleton. Issy has a severe form of Autism. Last year, her mother decided the best course of action was to murder Issy and herself. She did not succeed. The mother is in jail, having pled down to child abuse a few weeks ago. A major media figure is interviewing her today. The mother is a victim in his view, because Issy is too much to take care of.

The way it works in my city, attempted murder is attempted murder. There may be extenuating circumstances, but it’s still attempted murder. Why then is the mother receiving so much sympathy and recognition? Because Issy has a disability.

People with disabilities are often seen as “less than.” Less than capable. Less than worthy. Less than valuable. Less than necessary. Less than human.

Yes, this family needs support. The services that Issy needs aren’t available. It’s not just Issy. I know my city fails at meeting the needs of people with disabilities. I know that many schools feel it is appropriate to request a parent to medicate their child into compliance rather than figure out what the child really needs.

We have failed. In our eagerness to create equality, we have left our most vulnerable behind. In our rush to make “more” out of people, we have discarded those we don’t feel have value. Every life has value.

Now think about what you can do. Take some time out of your day and look at your neighbors. How many of their names do you know? You can effect change. Reach out to others and develop real, live friendships instead if sending virtual hugs. Don’t be afraid to say hello. Sometimes, just knowing that a person cares is enough. Other times, knowing you can reach out and ask for help is a treasure.

Don’t try to put yourself in the mother’s shoes. Issy is the victim. Issy is reaching out the only way she knows how. Can you hear her?

 

 

Heroes

I  am so tired of teachers! Yes, all of them. And I’m theoretically one of them. Just try, for just a bit, to see your students as something other than a job. Try to leave your personal issues at the door so they don’t bleed over into the classroom. Try to be an adult and not resort to shaming children to cover up your inadequacies and mistakes. Recognize that you are a role model and then act like one.

I know you’re overworked, underpaid and very underappreciated. But, you chose this profession. You made a conscious decision to impact lives through education. You can also choose to change. No one is forcing you to continuing teaching.

Consider the harm you are capable of unintentionally inflicted upon students with your careless words and blasé attitude. Your students think the world of you. And yet, these same kids get beaten down because you have too much else on your plate to see what they can accomplish. You don’t see their potential because you are too busy trying to point out their flaws.

I miss my village. I miss compassion, understanding and cooperative effort. I miss having people in my life that are willing to hold me accountable without tearing me to bits. Here’s to you Mrs. Dunning, Mrs. Johnson, Mr. Cleckner,  Ms. McCray, Mr. Nissly and Ms. Fisher. Even Mr. Hashim who made me copy pages from the dictionary because I swore in class. Here’s to all the adults who watched over me and took the time to redirect my course when I strayed too far. Wherever you are, you are my heroes.

“14 Things I Hate About Being Autistic”

http://suburbanautistics.blogspot.com.au/2014/07/14-things-i-hate-about-being-autistic.html?m=1

My Favorite:

6: It is usually assumed that I have “conquered” or “defeated” autism, and that anything I have achieved is in spite of autism. A phrase I hear a lot is “I would never have known that you were autistic”, as though autism is this hugely negative and obvious thing that a non-expert would be able to pick in a second. (Or, as though society is made up entirely of autism experts). This is well-intentioned but problematic because it carries the underlying assumption that if I have done something considered as “successful”, then this must have been despite my autism. In reality, autism is a part of everything that I do. Autism is not an enemy that needs to be defeated. My autism hasn’t been “overcome”. This issue is also symptomatic of the wider ignorance as to how autism presents – in reality, most of us would not be able to pick an autistic person out of a crowd. 

Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism

I wish I could speak this eloquently!

 

Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism.

Undercover Autistic: on disclosing autism in the (academic) workplace

I’ve been undercover most of my life. Now I’m “out” I can read pieces like this and vigorously nod my head in agreement.

 

Undercover Autistic: on disclosing autism in the (academic) workplace.

Autism…It’s not an epidemic

I’ve had a few months now to come to terms with my diagnosis. In a way, I guess I’ve always known. I was labeled gifted in 1973…kindergarten for me. Throughout school, I remember the run ins with teachers, the compassionate few that took me under their wing and, well, the bullies. I was a special education teacher until my other health issues got to be too much to juggle with a job. From that perspective, I can honestly tell you that I think we have made great strides toward including learners of all abilities. However, the overall system is still in place. As are the teachers who don’t understand things, the compassionate few who guide instead of punish and, well, the bullies. In spades.

I keep bringing up bullies because that behavior is so prevalent in American society (might be in others, but I don’t have personal experience there). Really, would it be so hard for people to just stop thinking solely about themselves and consider the impact of their behavior and words on others? There is a social media meme that states “Kindness is free. Just sprinkle that stuff everywhere!”

I don’t think it would be that hard to think before you say or act. Forty years ago, that’s how kids were raised. I’m not going to lapse into a “good old days” speech because while I believe in boundaries, sometimes I saw kids whose boundaries were so tightly defined, they suffocated. Parenting requires effort and balance.

In case you’re wondering by now…there is a reason for the title of this blog. One of the biggest bullies in the Autism community is at it again. You’ve probably heard about Autism Speaks by now. If not, feel free to search the web. You’ll find lots of information, both pro and con. For me personally, Autism Speaks does not speak for me. I can see why some families want a cure and if that’s for you, ok. But like everything else, I don’t think it should be forced on people. If you weren’t prepared to raise a child who may be different from you in behavior, beliefs or any other way, you probably ought not to have children. Every little human eventually grows up. They may or may follow in your footsteps. Accepting that different is okay will go a long way towards sprinkling kindness.

Autism Speaks actively negates all the good things Autistic individuals are capable of doing in their lifetimes. I know many Autistics that are quite accomplished by society’s standards and even more who are successful in their chosen pursuits. Yes, these individuals are primarily what is now considered “high functioning” under the spectrum diagnosis forced on us by the DSM-V. I really struggle with that verbiage. It allows organizations like Autism Speaks to propagandize against Autistics with impunity. Now we’re all “suffering” from a “disease” that is an “epidemic.”

Curious? Check out http://autismwomensnetwork.org/film-review-of-documentary-sounding-the-alarm-battling-the-autism-epidemic/. I can’t watch the “documentary” without getting really angry. I want you to substitute the word “cancer” for Autism and see how you feel by the end. Because that is what is implied…an epidemic in need of a cure. Oddly enough, the only part where adults are asked anything is a segment about :30 seconds long. As I said, all little humans grow up. We aren’t “cured” when we turn 18. We don’t develop powers of invisibility. I’m still here as are thousands of individuals who grew up Autistic.

Honestly, if I wasn’t being singled out for Autism, I would have been singled out for something else as I was growing up. Proof? Autistics attended separate schools when I was younger. Remember, the education laws everyone holds up now were enacted in 1974. That means about the time I hit high school, I saw my first “disabled” student in my own school. I wasn’t diagnosed Autistic. I was gifted and quirky. There’s a reason I started college at 16…I couldn’t stand the one size fits all high school I attended. My teachers disliked me. My fellow students shunned me (there are 3 friends from high school on my social media page). It was a living hell.

Read the review. Think about what you could do differently. Sprinkle kindness and sow acceptance. We’re all in this together and if you’d like things to change, remember the change has to start with YOU!

New Autism Speaks Masterpost (Updated 6/20/14)

I don’t usually reblog, but this piece contains so much information about Autism Speaks that needs to become more widely known. I highly advise people to thoroughly research the charities they support to ensure your hard earned money is being put to use the way you think it is by your chosen charity.

 

New Autism Speaks Masterpost (Updated 6/20/14).

Life happens, even when we’re not looking

In three words I can sum up everything I’ve learned about life: it goes on~ Robert Frost

Life can be a tricky thing. It’s always full of surprises, some pleasant and some not so much. Remembering that what some consider pleasant, others consider absolutely horrible is a full-time job. I am constantly amazed at how different people take the same information and shape it to fit their needs.

For example, I raised two children who are on the Autism Spectrum and a third who has her own challenges. When one child was first diagnosed, people were shocked. When the second one was diagnosed, people starting asking me what I did wrong. Did I vaccinate them? Feed them mercury-laden fish? Drink alcohol while pregnant? Breathe in toxic fumes? How could I ever be successful raising three kids when two demanded so much attention?

The truth is, I didn’t “do” anything wrong. Despite what news stories you may have read, Autism happens across all demographics. I don’t believe there is any one thing that is the root “cause” of Autism. All the time spent wringing hands around why Autism occurs would, in my opinion, be better spent raising awareness. I don’t believe there is a cure unless we start messing with genetics. Then we assume that we aren’t going to muck something else up in the process and that is one heck of a slippery slope to start sliding down. So, learn something new. We all do, every day.

I’ll start off with a nugget of wisdom…If you’ve met one person with Autism, you’ve met exactly one person with Autism. Even my two kids, having the same diagnosis and being raised in the same environment, are vastly different from each other. They have different challenges, they learn different ways, they communicate in different styles and yet, they are so much alike. I believe that is because deep down, they are my children and have been shaped by how they were raised. The successful, caring young adults that all of my children have become is because of how they have lived their lives.

Shocking, I know. Life changes us in ways we never imagine. Sometimes, we don’t even notice the change has occurred until one day, we look back and say “whew, that was a wild ride!” We get up, we go about our day and then go to bed to start the cycle over again the next day. Yet, each day is different and how we take in the information and mold it to fit our needs changes us. From brilliant sunrise through the darkening hours, we are adapting and changing.

So, I challenge you. Learn something new today. Randomly type something into your search engine, like “official animal of Scotland” or “Dr. Robert Moog.” Use your search engine to find your Doppelganger (you can look that up too). Play, learn, live. Let new things into your life. I’ll bet you’re surprised by the way your life goes on, even as you’re changing.