Spectrum

Every Month is Autism Awareness (Acceptance) Month Over Here in the Alternate Universe

Fran Templeton — Thu, 26 Apr 2012 14:10:25 +0000

As the official Autism Awareness month draws to a close, I have once again been reminded just how much dissention and acrimony exists within the autism world. This was heightened this year by the CDC’s announcement that 1 in 88 children are diagnosed with an autism spectrum disorder. Now, it seems that people who don’t live in this alternate universe are also weighing in on the controversy. This announcement, along with the DSM proposed classification change of how people on the spectrum will be classified in the future, has unleashed a fire storm of opinions in major news sources about whether there is truly even an increase in the number of persons living and being affected by autism spectrum disorders.
So, please let me add my opinion to the fray.
I don’t care whether it is Autism Awareness or Autism Acceptance Month.
One group decided to try and change the focus from awareness to acceptance of autism. As a parent of someone on the spectrum and an educator of hundreds of students and families living on the spectrum, we are all too aware of autism. We have also been forced to accept autism a long time ago. There was no real choice not to be aware of it or to accept it. Autism is right there in our face every day.
Autism Awareness month was not intended primarily for people living in the alternate universe. It was intended to help other people become aware so that they could accept our loved ones! It was intended to bring awareness so that funding for research and autism programs would increase. It was intended to bring awareness so we would have less irritating, short-sighted, judgmental people to deal with each day.
Each group representing persons with autism spectrum disorders has a valid approach to autism support. I have been witness to the Facebook wars over whether it should be acceptance or awareness, whether groups should be spending money on research or treatment, whether its better diagnosis or a true increase brought on by a variety of supposed causes….and on and on it goes.
People! Wake Up! You do not have to attack another group to get your particular message out! Can you not see that all of the different emphases add up to studying different areas of autism? We can continue to emphasize our particular view of autism without attacking another’s point of view. When we attack each other, we weaken the cause and hinder finding solutions.
I don’t care if it’s better diagnosis or an actual increase in the numbers of persons living with autism!
Better diagnosis or an actual increase is not what matters. What matters are the people living with autism! What matters are the families who live with autism every day! Let’s spend all of our time figuring out how to make their lives easier, more productive and happier. That’s what matters!
Stop wasting time debating the wrong issues. Let’s work together to find solutions.

On this we can agree:
There are not enough appropriate services and effective treatments for autism.
Most of our school systems are failing children with autism.
Children with autism grow up into adults with autism and they aren’t finding interdependent places to live and work.
There is not adequate medical care, insurance and effective ways to cover autism treatment for all ages.
Family members are left with the responsibility of care for and treatment of persons with autism throughout their lifetime and we are tired!
I choose not to use a drop of my energy to fight other people who are living over here in the alternate universe with me. You are entitled to your particular point-of-view and so am I.

Living in the Alternate Universe on World Autism Awareness Day 2012

Fran Templeton — Mon, 02 Apr 2012 15:55:26 +0000

Why should there even be a World Autism Awareness Day? Here are my top ten reasons:
1. To honor all the true heroes living with an autism spectrum disorders every day. This is my beautiful son who every day fights the challenges of living in a world that thinks differently than how he thinks–who is still learning how to make it in this largely “social” world filled with annoying sensory experiences that he must endure every day. He is the kindest soul and tries harder than anyone I know.

2. To honor all of the siblings of children with autism spectrum disorders whose lives are forever changed just because their brother of sister was born with autism. This is my other beautiful son who is now a fantastic teacher because he had to learn to teach kids with autism to make it in our family.

3. To honor every mother and father who gave up or changed their dreams and careers in order to help their children become everything they could become. To the mothers and fathers who were once bankers, stockbrokers, engineers, secretaries, presidents of companies, homemakers who willingly gave up their life to become advocates and agents of change to make the world a better place to live for everyone. This day honors mothers and fathers everywhere who have now chosen the “career” of advocating for their children and have taken a “backseat” to the needs of their children.

4. To honor all grandmothers, grandfathers and extended family members who stood beside their family during the hard times—through getting the diagnosis, through all the medical problems, through all the financial problems, through all the therapy, through the years and years of living in the alternate universe.

5. To honor those dear friends, who without their physical and emotional support, you would not be coping today. A kind, understanding and loving friend can make the journey of acceptance bearable. To that dear person you can laugh with about all the funny things our kids do and say. To that dear person you can cry with when you simply had enough!

The Advocates and Mothers of the Central Texas Special Education PTA

6. To shine a spotlight on why people not living in the alternate universe should care! If you are lucky enough to still be living a life not affected by autism, here is the reason you should care:

If we cannot find a solution to this international health problem, eventually your tax dollars will be paying for the care of many people with autism. It will be money out of your pocket! Forget all about “doing the right thing.” We have years and years of experience with people in places of power not “doing the right thing.” Work with us to find solutions because if we don’t find solutions as these young people grow up, we will all end up paying for it in the end with literal dollars and with human toil.

7. To shine a spotlight that increased knowledge often leads to increased understanding. We need doctors and all health care workers to understand autism and become knowledgeable about how to treat autism spectrum disorders. We need lawyers to become knowledgeable about autism and the prevalence of discrimination on all levels. We need more teachers who understand autism and are willing to find new, successful ways to teach and reach students with autism. We need program administrators and school principals who understand autism and are willing to include persons in their programming without discriminating against them.

8. To shine a spotlight on why we need healthcare reform! Most people with autism are still excluded from receiving insurance coverage for the conditions that relate directly to their autism. Autism Speaks has made inroads in helping states enact laws to force insurance companies to provide early intervention and treatment, but there is still a long, long, way to go.

9. To shine a spotlight on neurodiversity and individuality. People with autism have their individual way of viewing of the world. When we, as a society, learn to accept differences and embrace neurodiversity the world becomes a more inviting and loving place.

10. To shine a spotlight on all of the many, many organizations who exist to better the lives of people with autism. Light It Up Blue is a project of Autism Speaks. The Autism Society of America provides a host of different services oriented for families of children with autism. There are literally hundreds and hundreds of organizations that exist to help persons and families of persons with autism. Today is the day the spotlight shines on you and we thank you for your work and dedication.

Understanding How Social Cognitive Deficits in ASD’s Masquerade as “Bad” Behavior

Fran Templeton — Fri, 10 Feb 2012 05:52:01 +0000

So, what does this mean for your child with an ASD? It means that if they have difficulty representing others mental states, such as yours and others beliefs and desires, it will be very hard for them to predict your and other people’s behavior and react accordingly.

Baron-Cohen, Leslie and Frith (1988) go so far as to make a direct association between the triad of weaknesses in ASDs (social functioning, impaired communication and lack of imaginative play) and this single cognitive deficit called Theory of Mind.

Let’s examine how this affects our everyday life with our loved ones with ASDs.

Does your child often interrupt you to talk about what they are thinking about, failing to notice that you are involved with thinking about something else–like cooking dinner or paying the bills or talking on the phone? As a parent, you can assume they are being rude and purposely interrupting you or you can understand that they think you are thinking about what you are thinking about! No wonder they get confused and mad when you cut them off.

Does your child speak the same on the playground as they do in the library or church? Is their voice too loud and are they apparently oblivious to the change of expected behaviors in different environments? You can assume they are just lacking manners and don’t care about others or you can understand that they do not have the ability to “size-up” the requirements of different environments and think about what others expect and adjust their behavior.

Think for a moment how often we consider what others are thinking about us. Why do we wear the clothing we wear? Why do we style our hair the way we do? Why do we find good hygiene important? Primarily because we think about what other people think about us. Many of us directly consider what others think of us in choosing our clothing and hygiene habits. We do not want others to think we are out dated or sloppy.

Now consider that our children with ASDs choose clothing based on comfort and predictability, not style. Consider that they generally find few good reasons to remember all of their hygiene skills. Does it make it easier for you to understand why these things aren’t as important to them? Their primary motivation is not based on thinking about what others think about them.

So, how does ToM relate to behavior? Many times we believe that our children are willfully displaying “bad” behavior and attribute motives we would have if we behaved that way. When, in fact, there is no willful disobedience behind a “bad” behavior because they haven’t even considered what you will think when they behave in a certain way. It is simply the result of a ToM cognitive deficit.

Understanding how your child thinks and how efficiently and accurately they can think about others thoughts is very important when teaching appropriate behavior skills. When we understand that ToM deficits often result in ““bad”” behavior, it makes it easier for us to teach the correct behavior rather than continue to punish the child for displaying ““bad”” behavior.

Theory of Mind skills can be taught in children with ASDs, but individual concepts must be broken down and taught as they are not likely to acquire these skills from tuning in to those around them and learning in ways typically developing children learn.

Next week’s blog will discuss various interventions that have shown promise in teaching ToM to children with ASDs.

Pete: My Success Story–A Breathtaking Account of Overcoming and the Human Spirit

Fran Templeton — Sun, 29 Jan 2012 19:27:19 +0000

In this week’s blog I would like to share a story written by one of my former students who has become one of my good friends. I worked with Pete as his In-Home Trainer the four years he was in high school and less frequently as he transitioned into the work world. Pete is an inspiration to children, adults with Asperger Syndrome and parents everywhere. He never had an easy go of it. He did have a mother who never gave up and as he says in the story, “Fran was mine.” Indeed, Fran was and is his and he has inspired me every day with my own son and all the other students I encounter.
“I’m Pete. This is about my big success story.
First of all, I’ll tell you about the problems and lastly the success. My big thing was frustrations with big temper tantrums when upset, plus I was easily bothered and did not feel good unless I was getting to my luxury stuff. Obsessive Compulsive Disorder (OCD) had me busy twenty-four-seven. I was diagnosed with OCD and Bipolar Disorder at age 3 and later diagnosed with Asperger’s Syndrome at age 14. I started taking my first medications at age 4. I went through tons of meds and was on lithium at age 8. That was insanely scary to do back then. These medications were only for adults, but my psychiatrist was one of the first to give these medications to young children. At one point in my life I began to have focal seizures and would stare and be slobbering down on the ground unresponsively. One episode lasted for 18 hours. EKG’s, MRI’s and CAT Scans were done and still no doctor figured out what was happening to me.
My case was too difficult for near-by doctors, so my mother drove us to Dallas to see neurologists and psychiatrists. By the time I was three years old, it was obvious by my behavior that I had bipolar disorder and OCD. My psychiatrist said I was one the earliest discoveries that children that young could have Bipolar Disorder. Back then people thought people didn’t get Bipolar Disorder until around age 17. I was such an interesting case my psychiatrist would see me for free!
I got angry if teased, picked on, or did not get my way. My sister was a normal person, and, of course, liked to tease me. It was Tom and Jerry all our lives until I got into high school. I was Tom retaliating at her annoyance—hitting her hard. And who gets in trouble? Me! I got spankings many times per day until I was in the eighth grade. I’ve wore blue jeans most of my life. Why? Spankings don’t hurt as bad on blue jeans as they do on shorts. My anger, though, was crazy. I’d be mad about the same thing for 48 hours. I did some stuff I shouldn’t have done. I would run off in anger (Don’t do this; you’ll regret it). But after time, I would always go back home, even though I was always very angry.
My OCD has changed to different things through my life. As a preschooler, I wanted pictures of anything I saw that I liked and I put them up on the bedroom wall. My entire room—walls, door, ceiling were all pictures. Food had to have a certain look or I wouldn’t eat it. I craved cocoa puffs and demanded them but I couldn’t eat the ones that with the bird in jail on the cover. I couldn’t eat at Wendy’s because I hated their sign with the girl on it. My mom fixed my favorite spaghetti and meatballs. One day she changed up the size of the meatballs and I couldn’t eat it. I couldn’t eat it until she went back to the original size meatball. I loved “Crunch Tators”, when the gator was dressed like a cowboy. Once the bag changed to a gator with a loose tooth, I could never eat them again.
I loved our country house. I lived there until I was age 13. I climbed high in the trees. I made traps the whole time I was up there, sometimes up to four hours. We had a huge sand creek behind three acres. I loved going in it. I played and picked up bugs and spiders. It was paradise to help with my mental strife. From back then most of the kids I went to school with remember me only for what my current OCD was—like fighting (making up tons of moves and styles and sharing them).
Today my OCD is about identity (comparisons of who I’m most like or making up my favorite traits). Until 2008, it hogged my entire day in thought and conversations. In 2008 I began to get control of this and these obsessions have dwindled every year. My current solution is I keep my identity to myself so I don’t talk to others about it and I don’t have to tell others my new form I’ve thought of. At present, when it is at its worst, I obsess a few times a week with others, but only by text message. I’m determined to stop and today as I’m writing this, ironically, I have stuck with the same identity in my head for four days for the first time ever. I love it!
At age 14, I moved in with my mom. My mom had a crazy personality, but was my true guardian. She would stand in front of a bullet for me, if she had to. After seeing one crazy-headed counselor who preached that I would go to hell of not going to school, I attempted suicide (which I had tried a couple of times when I was younger) and it failed! Yay! (Don’t ever do this. It’s lousy for you and the future holds great stuff; there is always a tomorrow!)
I went into the mental hospital and came out diagnosed with Asperger Syndrome for the first time. This got me a lot of help. Knowing about autism and its therapies has made help in my life. Fran Templeton was mine and has helped a lot. I still see her sometimes today. She knows stuff. She helped with my dad about me and he’s nicer than he was when I was in school.
I hated school and would constantly run off and skip school. The school hired a facilitator to watch me so I wouldn’t run away, but I still skipped. I wanted to do good and be a very great guy, but look at what I was doing. I went into the mental hospital a few more times.
My mom found a special school called Vanguard which helps people. She made the ISD pay for sending me there. My pet peeves in life were when people wouldn’t follow the rules. At Vanguard, they didn’t put up with that stuff. I saw bad people actually get in trouble just for being rude. I love that! I was very shy, but well-liked. So I began a journey to make myself good. I practiced and practiced to get better. If I just let this inner satisfaction lay around, I’d still do good, but I wanted to be the best I could be. I wanted in crowds to try to tolerate it. When angry, my answer was to withdraw, but not run away, just get into my room by myself. Still the hardest part was being teased, but I toughened up and began to not let it bother me so much anymore. It took me until age 19, to totally get control of this. But I’m there now. Anger and frustration became a miracle story of self-control. My relatives noticed and were so proud. My mom said I was the miracle story of Disney’s “Beauty and the Beast”.
What about the social problems of autism? I wasn’t fond of talking, so I mostly told my subject or barely answered theirs. I got to where I could answer others, but not all the skills of conversation at all. I went through a bad period of medication adjustment where I talked twenty-four-seven. I was called Random Man. After the medications were changed, I wasn’t afraid to talk any more. I wanted to learn proper social skills. Actually, it’s simple. Listen and talk about what they are talking about. Ask questions. Talk on the same subject. Use manners. I felt like Tarzan learning to talk like a human.
Nowadays, people don’t know I have any form of autism, bipolar, or OCD. They think I’m normal and I keep my diagnosis a secret. And I have lots of friends. They all say I am the nicest guy. I love it! Many people said I’d never be good. Vanguard, my mom, Fran Templeton and my stays in mental hospitals taught me a lot. But like training a racing horse, the horse should get the credit. I had to have self-discipline.
This is my success story. Pete.”
Author’s Note: Pete has been successfully employed part-time at a Head Start Program working with young children for almost ten years. He has attended continuing education classes at his local junior college and he lives in his own apartment and drives his own car. He receives limited assistance from government funding programs.

Resisting That “We” Versus “Them” Mentality

Fran Templeton — Tue, 10 Jan 2012 20:21:44 +0000

Resisting That “We” Versus “Them” Mentality
I’ve thought long and hard about New Year’s resolutions for families with autism. I’ve finally come to my resolution, which is a reaffirmation of all the previous years’ pledges. I pledge, again, to lead and encourage families of persons with autism to become a unified force for change.
I’ve been living over here in the alternate universe of Asperger Syndrome before Asperger Syndrome was a listed disability. So I’m no new kid to the universe. Here are some very disturbing attitudes I see of loved ones with autism:
1. Autistic Disorder versus Asperger Syndrome: The most disturbing trend I see recently is whether Asperger Syndrome is even a “real” disability and if so, how it’s so much better to have a loved one with Asperger Syndrome than a loved one with autism.
Wow! People! Get a grip! All disability is undesirable, and, all disability comes with inherent strengths, not just Asperger Syndrome. Why on earth would we spend any time fighting about which one is worse? Talk about a poor usage of time and limited resources!
2. My intervention versus your intervention: This one drives me crazy. People are individuals and individuals must decide what intervention they feel will work for their loved one. Yes, it’s true that parents should have all the information about peer-reviewed, research-based interventions in order to make an informed decision. I will always see that the families with which I work have access to this type of information, but there are a whole lot of families out there who distrust peer-reviewed, research-based interventions.
Families need to understand that fear is the basis for this type of attacking other families because they didn’t choose the same intervention method. Every parent desperately wants to do the “right” thing that will make the most difference for their child and family and when another family chooses another method, it strikes at the heart of that fear, “Did I make the right choice?”
3. Recovery versus lifelong condition: There are clearly two separate camps with thousands of parents everywhere in-between. The recovery camp focuses on totally separate issues from the lifelong condition camp and each side believes the other side is crazy, if not neglectful.
Families need to understand that there as many reactions to autism as there are people. There is no “right” reaction. Families also need to understand that reactions (feelings) change over time, and just because a family is taking a certain approach now does not mean they will be taking that same approach ten years from now.
4. Disability versus gift (fix versus celebrate): Parents of children with complicated, multifaceted disabilities are going to have a totally different perspective from families who have kids with disabilities who also have obvious traits of giftedness along with disability. You bet the parents of kids who are non-verbal, have negative behaviors and overpowering sensory disabilities want to FIX their loved one. You would too, if you were in their shoes. Parents as blessed as myself feel, the importance of celebrating the gifts that Asperger Syndrome brings.
We need to realize that one perspective does not negate another perspective.
5. Inclusion versus specialized services: People who have family members living in state supported living centers (institutional settings) will fight to the death for their loved one’s right to stay living in a familiar environment. Parents fight over whether inclusion or specialized classrooms are appropriate for their loved one. When will we ever realize there is no one “right” or “wrong” approach to educating someone with a disability?
A basic lack of available resources is at the root of much of this division and fighting. There is something sinister that happens when people are given limited resources. Think of people stranded on an island where there isn’t enough food and water for all persons to survive. There is a survival instinct that kicks in and makes us fight to live; to fight over the limited resources because we want to survive. People in these types of situations are released from social norms because survival is at stake.
Unfortunately, there are very limited resources for all persons with disabilities in this country. This lack of available resources tends to lead parents into “camps” or survival groups–willing to fight to get what they feel is necessary for their child and family to survive at the expense of another child or family.
I talked about fear above. Fear is a powerful motivator to fight wars. Look at the history of our country. How many wars have been fought because we “feared” as a nation what would happen if we didn’t go to war. Autism is no different. Fear is all too often the primary motivator in fighting autism and drives too many of our decisions about education and treatment. Hope is a much more stable emotion to access when we are fighting autism’s effects on our lives. When we hope for improvement and change rather than fear what will happen if we don’t do particular thing, the decision is usually a more rationally thought out decision.
If we as parents want our children to be accepted, loved and included as society members, we as adults MUST set an example by being inclusive of others who do not share our particular perspectives.
So, this year I pledge once again to fight fear and division in the autism community and in the disability community in general. Will you join me by focusing on the things we have in common?
1. None of us want to be the parent or a loved one of someone with a disability. Yet, here we are. We all have that in common. No one I know said, “Gee, I hope my child is born disabled.”
2. We are all being discriminated against in various ways. It takes a united front to fight discrimination. Groups experiencing discrimination cannot overcome that discrimination by breaking into factions and fighting among themselves.
3. We all want the best of everything for our children and families. We just have differing ways of achieving this and differing abilities and resources available to accomplish this outcome. Tearing each other down rather than building each other up will NOT result in the best outcomes for our children and families.
Let this be the year that more and more of us come to our senses and learn to respect each other’s perspectives, stop fighting over limited resources and accusing and blaming others for their decisions. Let this be the year we come together as a community to increase resources and seek inclusive, non-discriminatory practices for our children and for ourselves.

Tips for Fighting that “Bah Humbug” Feeling Over Here in the Alternate Universe

Fran Templeton — Wed, 14 Dec 2011 22:30:45 +0000

Do you just wake up some days wishing that your life was easier? Do you just wish you were back in your dream life and not over here in this life you have? I don’t know about you, but this is the time of year I wish I’d been dealt another hand of cards. It seems that the holiday season makes me morose. Since I’ve talked with many of you who also have to work to be positive and hopeful this time of year, I thought I’d give you some tried and true strategies for fighting that “bah humbug” feeling.
1. Count your blessings – one-by-one. When I’m hitting bottom, I sit down with a sheet of paper and look at the larger picture. I slowly begin to write all of my blessings out on that sheet of paper. I am thankful for: living in America, for freedom to make choices, for a roof over my head, for the food I eat each day…… and on and on it goes. I stop when I have the sheet full. I put this sheet up on the bathroom mirror to remind me that life isn’t so bad.
2. Call your girlfriends (or guy friends, if you’re a guy) who have kids with disabilities. There is no better medicine than a friend! I can take an hour of two over coffee or something stronger and say anything I feel and listen to anything they feel and the world looks like a much brighter place at the end of that time. This time is usually filled with laughter and laughter is one of the best forms of therapy for the blues.
3. Do something for someone else. When I am doing something for someone else, I’m thinking about them and not myself. I always end up feeling better when I help someone else. The world is full of needs. Find just one need and fill it.
4. Remember the importance of self-care. Often we get down because we push and push and fight and fight and survive and survive until we can hardly stand any longer. To be a good warrior, we must remember that we will not be able to fight on if we don’t pause to take care of ourselves. Every so often, I get up in the morning, look into the mirror and say, “OK, today I don’t have what it takes.” When this happens, I give myself a break and get a massage! A good massage is all about you. Do something occasionally that is all about you. By the way, a massage gift certificate is the perfect gift for the mother of a child with a disability.
5. Just admit you are powerless to change everything and write it off by saying, “Oh, well.” I’ll never forget the day I was providing respite to my girlfriend’s son with significant disabilities who could not be left alone for a moment when the darn dog darted out the front door. I called my friend in a panic screaming, “The dog got out. I can’t leave Bubba to go hunt for the dog.” I am freaking out; in a total panic. Her calm reply was, “Oh, well.” The shear wisdom of that little phrase has gotten me through so much junk in my life. Sometimes there IS nothing that can be done at that moment but to pause and say, “Oh, well.” By the way, the dog came back after a while and I did what was important, I took care of Bubba.
6. And last, tell yourself that it could always be worse—because take it from me—IT CAN BE! Right next to that page of blessings, I take another sheet of paper and write down all the ways life could have been so much worse. I scribble down on that piece of paper all the ways my life could be so much worse. Everybody’s ‘life-could-be-so-much worse” list is very different and personal. I’ll let you write that one yourselves, but at the top of my list is always: I could have never had either of my boys. Life would have definitely been much worse. They are such a blessing to me.

What are your strategies for staying positive and hopeful in this season?

On Getting Knocked Down Again…..There’s One in Every Crowd

Fran Templeton — Wed, 30 Nov 2011 15:30:02 +0000

Do you live in fear of when the next shoe will drop? If things go along smoothly for too long, do you just sit back and wait for something bad to happen? Many children with Asperger Syndrome and their parents have expressed living in this state of “waiting for the next bad thing to happen.” One thing we have in common with our kids with Asperger Syndrome is that we get “knocked down” at regular intervals. We get bullied often!
Living in this state of anticipation for bad things to happen, changes all of us in many ways. Just like many of our children, we live in a state of constant low-grade anxiety. We become isolated with our children trying to avoid the next meltdown or the next mean comment or action by those who don’t understand. We become cautious, fearing taking risks. We become glum and pessimistic about the intrinsic good in others because we see the rotten side of people so often.

So, the question is how to live in a positive state of mind when so many bad things keep happening to us. I have adopted the point of view that one of the great truths of life is there will always be one in every crowd! There will always be one person who will pick on my child or me; one person who will irritate my child or me; one person who will not understand or even want to understand my child or me; one person who is always the bully. We all know that one person who takes it upon himself to make our life a living hell.
For all the years I have worked with students with AS, this is one of the first things I teach them. THERE IS ALWAYS ONE IN EVERY CROWD.

Children with Asperger Syndrome seem to be particularly susceptible to these bullies. Parents of these children also seem to be particularly susceptible to these bullies, as we feel we must “fight” for our kids. It is critically important for us to learn strategies to deal with these people.
The lesson goes like this. If you know there will be one in every crowd, then you must learn how to deal with this person, as there will never be time when you won’t be encountering him or her. The first step in this process is for the person with AS to learn that who they are and how they think is just as OK as how others think and learn. Families also have to learn that is OK for their children to be different. This is huge! In trying to “help” our children we often give subtle and not-so-subtle messages about what is and is not acceptable. We must learn to support our children’s differences while teaching them how to survive in a world that thinks differently from them. This message of acceptance and support must come in loud and clear to our children. If we as parents are invested in making them” look” more normal, our children will pick up on this!

So, the first step in learning to deal with bullies is acceptance of self and feeling like there is a core team of people (or at least one person) who support this child’s unique view of life. This core team of people must also exist for the family unit. Don’t get confused, I am NOT talking about unacceptable behavior. There is a way to teach acceptable behavior while accepting and supporting the individual with AS. Families also have to learn acceptable behavior in the face of bullying.

The next step is forming a unique family strategy for dealing with the “one in every crowd.” This strategy will be unique to your family. Before I discuss this further, I want to recommend that you DO NOT take the approach that the person with AS should “beat up the kid.” This approach has tragic results when applied to a person with AS. Generally, the kids with AS will end up in trouble and the bully will get off with little or no punishment. The other problem with this approach is that it might also get applied out of context to adults and then law enforcement will be involved.

Here is one family’s strategy for helping their child with AS:

Dealing With One in Every Crowd

I acknowledge there will be one in every crowd. I am OK. I do not need for others to say that I’m OK. I’m just fine. My family loves me and will always help me. I can always talk to them about anything or anyone who is bothering me. Ms. (safe person at school) will always help me. I can talk to her about anything or anyone who is bothering me.

I am important. The bully has a problem. I want to stay out of his problems. I am the boss of me. My teacher is the boss of the classroom. Here is what I’ll do:
1. Ignore the bully if he’s just using mean words. I don’t care about the mean words. I’m OK.
2. Report the bully to my parents and safe person at school, is he’s threatening to hurt me or anyone else.
3. Ask my parents and safe person EXACTLY what I am supposed to do to stay away from the bully.
4. I will do my best to follow the plan to stay away from the bully.

Bullies come in all forms: adults, children, male and female. THERE IS ONE IN EVERY CROWD! I can deal with bullies and stay safe and strong.
There is always one in every crowd. How we, as families, handle this one in every crowd is the best influence possible on how our loved one with AS will handle bullies and life’s other adversities.

I Am Most Definitely NOT Thankful for Autism!

Fran Templeton — Tue, 22 Nov 2011 15:19:58 +0000

It’s the season where everyone is focusing on the things for which we are thankful. Since I have lots of parents of children with autism spectrum disorders on my Facebook page, it seems that each day at least one of these parents posts something like, “I am thankful for autism, because……” Let me go on record. I am most definitely NOT thankful for autism in any form!
Why would I be thankful for a developmental disability that has been so harmful to so many children and destroyed and altered so many families? Let’s face it. Autism stinks! I could have lived my whole life quite happily without ever encountering autism, much less living with it every day. And I’m willing to bet you that your loved one with autism feels the same way!
Now before you think I’ve have lost my mind, I do understand that when parents write they are thankful for autism, they mean they are thankful for the things autism has taught them. They mean they are thankful for all of the wonderful people they have encountered on this trip into the alternate universe. They mean they are thankful for their children and their family.
Perhaps the thing I which I am most thankful is that autism hasn’t broken me yet. I’m still standing. I’m still fighting. I’m still helping. And so are you!
The thing for which I am most thankful is acceptance. Acceptance brings clarity and a type of uneasy peace, but peace. Once I accepted that this life had been chosen for me and that I had no power to change that, acceptance followed. Acceptance is a hard concept, because often we equate acceptance to defeat. If I accept that for now there isn’t a cure, then I’m giving up. If I accept that my child thinks differently from others, then I’m giving up on him or her being “normal.” Nothing could be further from the truth!
I believe that acceptance should be equated with celebration. Celebration of the person—not the disability. Celebration of the gifts—not the differences. Celebration of survival—for all involved.
So now I will tell you the things for which I am MOST definitely thankful. First and foremost, I am thankful for every child I have ever met with autism. I have learned more from them than I have from any book or any parent. And I am particularly thankful for Temple Grandin. Her ability to talk about her experience and to teach so many of us has changed my son’s life and the lives of thousands of children with all forms of autism spectrum disorders.
Please forgive me before I even say this (because the government isn’t very popular right now), but I am thankful for the government of the USA. Without the government and it’s grandfathering, mentoring and grant programs, I would probably still be an uneducated person working in a routine job. I have been so blessed to be at the right place at the right time to take advantage of some of the finest disability training, all at government expense while I was also being paid to do a job! Only in the USA.
I am so thankful to be living in the USA. Yes, justice is often hard to find here for our children and adults with disabilities, but we have the right to fight for justice and bring about change without being arrested or even killed. While we continue to be frustrated by hard it is to obtain a free and appropriate public education for our children and adequate services for our adults, I am thankful that it is even a possibility for us.
And I am thankful for you—all of my dear “parent” friends of kids with ASD. My world is rich because of you. I have learned more about survival, perseverance, justice, hope and kindness from you than I ever dreamed possible. It is an honor to know each of you and I look forward to continuing to work with and get to know many new parents each year

Finding Forgiveness in the Alternate Universe of Asperger Syndrome

Fran Templeton — Wed, 02 Nov 2011 20:37:44 +0000

I have been challenged to tackle the subject of forgiveness as it specifically relates to the family with a special needs person. What a challenge that is!
Like love, forgiveness needs to start at home. That would mean that I would have to truly forgive myself for all of the mistakes I’ve made through the years. Wow! Is that even possible? Yes, it is possible. I’ve had several moments in my life where I just decided to give myself a break and stop blaming myself for the mistakes I’ve made. But, I have found, like grief, self-forgiveness seems to be something I need to do again and again. It doesn’t appear to be a one-time-covers-all-mistakes event.
And then after forgiving myself I’d then need to forgive others who have wronged or hurt or me and/or the ones I love. That somehow seems an easier challenge. It is easier for me to explain away others actions as motivated by ignorance, carelessness, or self-preservation and just let them off the hook. It’s a lot harder for me to let myself off the hook, because I have to live with the results of my mistakes every day.

What is forgiveness? The dictionary defines forgiveness as: to excuse for a fault or an offense; pardon; to renounce anger or resentment against. Forgiveness then involves two parts: 1) excusing the offense or pardoning, and 2) letting go of resentment against the offense.
As a parent of an adult with Asperger Syndrome, the list of things I need to forgive myself for is lengthy. What about all that early erroneous advice I took from well-meaning professionals who meant well and really believed the advice they were giving me? I still wish to this day that I had not only listened to my heart, but actually followed my heart to take the actions I felt were right at the time!
The one thing I have totally decided to forgive myself for is for causing my son’s disability. I’ve decided that I really had no control over this and, therefore, if I had no control then I cannot blame myself for the outcome. At least I’ve totally put that one to bed.
What about all the times I made mistakes about how to handle his behavior that actually made it harder for him to develop into a happy adult? What about all the times I should have handled things differently with my neurotypical son? What about all the choices I made in my career that now obviously weren’t good choices? What about all the times I’ve settled in my personal life because I felt I had no other real choice?
I guess self-forgiveness for me is all about realizing and accepting that I did the very best I could do with the knowledge I had at the time. If you are searching for a way to accept decisions you made in the past, I encourage you to realize that we can only make decisions based on the knowledge we have at the moment the decision was made.
So, in a way I have rationally forgiven myself because I realize that I had no real control over the situation at the time. I only had the understanding and knowledge that I had at that moment to make the decision. What I have not been able to continuously do is let go of the resentment or anger at myself for being so stupid! That’s the emotional part of forgiving oneself—really letting go of the anger and resentment at oneself for making mistakes.
So, for me, forgiving others is not nearly as hard as forgiving myself. I can rationalize their behavior that hurt me and let go of most of the anger. For the rest of the people who I need to forgive, but cannot find complete forgiveness for their actions, I put them in a “hole” in my mind where they sit until the day comes when I will be totally able to forgive them and let go of the anger and hurt.
Unfortunately, I still find it difficult to rationalize my own behavior that has placed me where I am in life now. But, every day I keep trying and I focus my energy on helping others avoid some of the mistakes I made. That gives me the hope and courage to keep going.

If You Don’t Know Where Your’e Going, You Might End Up Somewhere Else

Fran Templeton — Tue, 25 Oct 2011 21:57:04 +0000

Lots of questions come to mind when I think of planning for a future. Mainly, how am I going to get through this day, much less tomorrow and five years from now? And, why do I keep starting over again and again? Why is it always two steps forward, one step back?

Let’s face it. When we have a child or adult with Asperger Syndrome, our choices are arbitrarily limited for us. Besides that, the future is a very scary place. That’s the main reason I try not to think about the future. It’s just TOO scary.

But, plan I must! I won’t be here forever. How can I enjoy life now and how can I enjoy life tomorrow, next year and for years and years after that? What good does it do planning for the future if everything will change without warning anyway?

Here some great reasons to plan for the future, scary or not:

I will not live forever. I MUST have a plan for what will happen when I’m no longer here to help.

I could live to be 100 or I could pass away tomorrow. I am definitely NOT ready!

Planning for the future makes living today scarier, but easier. I knew my son had to learn to live on his own. I knew school would end one day. While I battled fear and despair, thinking about what he would need to know to live alone in the future made it a lot easier for me to decide what was important today.

I actually want a life for myself one day. I dream of the day when I can make choices about my life and know that my son will be OK, even if I’m not around to help him. This keeps me focused.

Our children and eventually adults with autism want a life for themselves, too. They may not know what that life looks like or how to get there, but there is an innate desire in everyone to belong and to thrive with interdependence.

Governmental resources for persons with disabilities are becoming less likely each year. I must plan for the future knowing that I cannot count on my state or federal government to help me. This planning for the future makes me a vocal advocate.

Where does one start? Start with a vision. Start with hope. Where there is no hope the people perish. Write that vision down. Enlist the help of your family. Enlist the help of your extended family. Enlist the help of friends. Friends will help a lot more than you think they will, if they are asked to specifically perform a task. They just don’t often know what to do. If you give them specifically something to do, they often try to help. Build your own personal support team around your family.

Then remember to take care of yourself and your family AS you take care of your loved one with autism. Broken families (I know from personal experience) and emotionally and physically sick parents cannot effectively build support systems for their loved ones with ASD.

I challenge each one of you to sign onto this blog and enter your personal vision for your family. I’ll go first. I hope that one day I’ll be able to travel and retire from working each day. I hope my adult son will be happily married to someone who truly loves him and helps him. I hope he’ll continue to feel more empowered, less-anxious and stressed and better about all the gifts he has to give to the world.

For now, I know what we need to continue to work on.