Autism Speaks: Will they ever learn?

The caffinated autistic updated their post from December 2015 regarding Autism Speaks to make sure the data was updated. There isn’t any improvement in their ability to actually be there for the people they claim to represent. Links to the information are found on The caffinated autistic’s blog. Autism Speaks do not cease disappointing.

Update 4/4/17 – as of December 2015, Autism Speaks now has two autistic board members, Dr. Stephen Shore and Dr. Valarie Paradiz.   In addition, their mission statement no longer includes the word “cure” .  You can read more specifics here. 

When a person thinks of the term “Autism Awareness” in the United States, it’s usually one organization that comes to mind – Autism Speaks.  It is heralded by celebrities, politicians, nonprofit and for profit organizations alike. Many parents of autistic children enthusiastically applaud their “efforts”, even partaking in fundraising, despite not knowing much about what those efforts entail.

Ask an autistic person, however, and you might get quite a different picture of Autism Speaks.

The number one tenet of any activism among disability groups is “Nothing About Us Without Us”, yet Autism Speaks can’t even manage to meet this one basic qualification.  They have never had an autistic member on their board.  Their current board consists of parents, including one who founded SafeMinds, which has contributed to the anti vaccination movement, as well as another board member who used be a board member for Cure Autism Now. To view the full list, click here. To view a list of other leadership in their organization, click here.

The only autistic person high enough up in their leadership to be worth mentioning was John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s Syndrome and part of their science advisory board.  He resigned his position in November 2013, a decision he spoke about on his blog.

Autism Speaks spends just 3% of the money they raise back into helping families and autistic people.  This comes in various forms, and not all of it is aimed at actually helping autistic people.  Some of it is aimed at communication devices for autistic children and teenagers, and this is of course a very good thing.  Much of it is also aimed at providing ABA therapy for autistic people, which is a behavioral intervention that much of the autism community opposes, particularly autistic people who are now adults who were subjected to it as children.  Some accounts of this are here, here, here and here……………..

The rest of the article is on The caffinated autistic

How Autism Awareness Goes Wrong

I am not a fan of Autism Speaks and their tactics. There is not enough autism and too much speak in their club. So much of their work goes toward demonizing autism and terrifying parents into supporting them and their “cure” theories. Really. Folks. Stop patronizing us.

Remember to put the person first! It’s a “person suffering from allism” not “allistic person” no matter how many times they try and tell you otherwise. It’s disrespectful to allow them their own choice in how they’d like to be referred.” (Tone it Down Taupe)

The word NO written in capital letters from a pile of blue and orange jigsaw puzzle pieces with a gray cardboard back. Pictured separated on a white background. Can also be turned upside down to spell ON.
flickr/Horia Varlan

April 18, 2016 | by

Friends, I want to talk to you about autism awareness awareness. We are, I fear, on the verge of an autism awareness epidemic, a veritable tsunami of awareness. Once a relatively rare phenomenon, the ailment, which is most commonly characterized by non-autistic people engaging in public handwringing about autism and/or feeling inspired by those tragically touched by neurodevelopmental disorders, has become increasingly common over the past decade. Some speculate that, within the next few years, as many as 1 in 2 people could have an awareness of autism.

In theory, more people knowing more about autism spectrum disorder would be a good thing. Autistic people, like me, could certainly benefit from the general public having a greater understanding of what our lives are like, and maybe even some genuine acceptance of those lives in whatever form they take. Increased awareness would be an excellent first step toward those goals. But the kind of autism awareness that is currently celebrated in day (April 2) and month (the rest of April) form was never made for people like me. I’d argue that it was never really made with anyone on the spectrum in mind at all.

The most nefarious incarnation of autism awareness is the kind espoused by Autism Speaks, which treats autistic people as little more than props in its various campaigns. The prominent charity’s simple and dishearteningly effective message—autism is bad and it must be stopped—misrepresents a complex condition and identity as a sinister looming specter that can and should be cured. It reduces the people who have autism to damaged, voiceless zombies bringing suffering to everyone who loves them, when in fact we are disabled human beings who might require treatments and accommodations unique to our circumstances. And Autism Speaks’ ends might actually be worse than its means, given that so little of its budget goes toward helping autistic people and their families……………………

The rest of the article may be read at The Establishment

Enduring bullying – one of my heroes

This post has been moved from my book-blog to this one

Hans Petter som liten

Man, I’ve re-written this article so many times. Who knew something like this could be so difficult.

My little brother. The baby of the family. A baby who is 195 cms worth of length. I think that translates to about 6’4″ for those of you who have not yet advanced to the metric system.

We go back a long way. In fact all the way back to the time when I was about 6,5 years old. I have no memory of him being born. In fact I have very few memories of him as a very small child other than the fact that he was really cute, I wanted to bite the top of his head and we would swing him between us down the long hill from church. He loved that.

My memories of my youngest brother do not really amount to much until the time our family moved to the US. He was around 7 years old at that time and his life was about to get really tough.

You know how some kids take to bullying like ducklings take to water. Well my baby brother had the great misfortune of meeting up with some of those kids. As a seven-year old boy my brother had three things that made him stand out. The first was that he was a gentle kid (he is now a gentle man) who did his best to avoid trouble. The second was that his English was poor due to us just arriving in the US. Finally, he has dyslexia. Three gifts for a bullier. Some kids and their parents I just want to beat to a pulp.

Five years of hell ensued. How did he respond to the bullying? For one thing he never changed from being a gentle person. He just wouldn’t give in and give up. He was fiercely protective of those he loved. At one time he even took on another kid for something that kid said to me. I didn’t stop the fight. In fact I figured it would probably give him credit with the other kids. But that was and is the kind of brave person he is. If someone he loves is being hurt, he will do his best to protect that person even if it means getting hurt himself.

It’s one thing to do something like that if you are good at it – whether you fight with words or physically. But my brother has never been one who has quick come-backs or been a good fighter. Granted, all he has to do is sit on you now and he’ll probably win, but still. Fighting with words and body has never been his strength. He has paid for that a great many times.

Why would that make him my hero? It’s all about love. His love for people is so great that he is willing to risk himself (and he knows he is risking himself) for them so they might hurt less.

2015 May 14: Historian Says Don’t ‘Sanitize’ How Our Government Created Ghettos

May 14, 2015 3:16 PM ET
A helicopter flies over a section of Baltimore affected by riots. Richard Rothstein writes that recent unrest in Baltimore is the legacy of a century of federal, state and local policies designed to "quarantine Baltimore's black population in isolated slums."
A helicopter flies over a section of Baltimore affected by riots. Richard Rothstein writes that recent unrest in Baltimore is the legacy of a century of federal, state and local policies designed to “quarantine Baltimore’s black population in isolated slums.” | Patrick Smith/Getty Images

Related NPR Stories

“It was not the unintended effect of benign policies,” he says. “It was an explicit, racially purposeful policy that was pursued at all levels of government, and that’s the reason we have these ghettos today and we are reaping the fruits of those policies.” ……………….

Read the rest of the article at NPR

Autism x 2 and social phobia

Hiding by Photodream art
Hiding by Photodream art

At this time of life I seldom play the “if only” game. However, there is one thing I dearly wish could have been different. Knowing about my own autism would have made understanding what was going on in my oldest son’s life so much easier. Instead, I thought he was just an odd version of average – much like myself. But, as we all know, the past is over and done with.

My asperger son struggles with social phobia (the full-blown kind). Not until puberty did we notice anything untoward. Slowly the monster inserted itself into his mind until panic-attacks were a daily event. We (my son, husband and myself) believe that puberty must have been the triggering factor.

Social anxiety seems to be a common problem for teenagers. According to US statistics 13 years is a starting age for social anxiety for many. On Health Center I found a description that puts into words what I observed in the early stages of my sons’ condition:

Mike, 15, has always seemed like a loner. At school he sits by himself in the lunchroom, and he has no friends, although no one particularly dislikes him. He never initiates conversations with his fellow students, and when someone tries to initiate a conversation with him he looks at the floor and speaks very quietly. He always seems to be on the outside looking in with the kids in his class. One night recently when he needed to call a fellow student to work on a group assignment, his mother noticed that he agonized over making the call for hours and seemed extremely anxious at the thought of it. He often gets stomachaches and extremely sweaty when called to the blackboard or asked to read in class. His parents have always just thought that he was shy, but they are beginning to wonder if something else might be going on.

We were those parents, until reality showed us that matters were much more serious than shyness. “Mike’s” level of anxiety was my level of anxiety back in my teens. At this level, the person suffering from social anxiety will not always need outside intervention. Perhaps my autism helped me overcome my struggles by its tendency to help me focus on matters I am really interested in. I was extremely interested in winning over my fears.

Life brought too much chaos into my son’s life over too short a time-span. Death of a loved one and the severe illness of another brought his ability to deal with life and anxiety to a stop. This was a dark, dark time for him. He had periods when taking his own life was extremely tempting. What kept him from actually following through was his fear of the potential pain around death and his desire to do interesting things again. As his mother, I would have understood if he actually did kill himself, but I am incredibly thankful that he did not.

What finally enabled my son to see past his social phobia had to do with two factors. The most important one was being diagnosed with aspergers. He now understood himself better. Hell, I understood myself better. Both of us realized that we were just regular Aspergers. The other thing that helped him was the apparatus that came to life with his diagnosis. The System also realized that there was more to him than a stubborn disorder keeping him down. This, they could work with.

And work we have. There are days like today, when he is not able to attend school. Then there are others when he does. One step forward sometimes leads to falling ten steps back, but he manages to improve ever so slowly. Being an asperger is a teeny problem compared to struggling with Social phobia. As always we take things one day at a time and accept that we and life is what it is.

Autistic mom / dyslexic daughter

What dyslexia might look like
Source: Flinders University, Australia

Dyslexia is a strange syndrome. Some scientists even deny its existence and seem to think that all a dyslexic person needs to do is have reading intervention to  “get over it”. Other scientists have found factors that indicate that dyslexia is a real thing. As a mother, I am going to state here and now that dyslexia is a very real thing.

The members of this family are fairly intelligent. My dyslexic daughter is no exception to that. In college he does well on her oral exams (at least thus far) and not so well on her written. It has been this way all his life. Sometimes that has caused laughter. When it comes to educational institutions anger, frustration and sadness have been more common emotions. We have even had teachers wondering if he was still dyslexic when he got to high school. The lack of knowledge among educators of what dyslexia entails is staggering.

Source: Reach, Don't Whine
Source: Reach, Don’t Whine

The traits my daughter shows are:

  • Appears bright, highly intelligent, and articulate but unable to read, write, or spell at grade level.
  • Labelled lazy, careless, immature, “not trying hard enough.”
  • Isn’t “behind enough” or “bad enough” to be helped in the school setting.
  • Tests well orally, but not written.
  • Feels dumb; has poor self-esteem; easily frustrated and emotional about school reading or testing.
  • Difficulty sustaining attention.
  • Learns best through hands-on experience, demonstrations, experimentation, observation, and visual aids.
  • Confused by letters, numbers, words, sequences, or verbal explanations.
  • Reading or writing shows repetitions, additions, transpositions, omissions, substitutions, and reversals in letters, numbers and/or words.
  • Reads and rereads with little comprehension.
  • Spells phonetically and inconsistently.
  • Trouble with writing or copying; pencil grip is unusual; handwriting varies or is illegible.
  • Clumsy, uncoordinated, poor at ball or team sports; difficulties with fine and/or gross motor skills and tasks.
  • Often confuses left/right, over/under.
  • Computing math shows dependence on finger counting and other tricks; knows answers, but can’t do it on paper.
  • Can do arithmetic, but fails word problems; cannot grasp algebra.
  • Excellent long-term memory for experiences, locations, and faces.
  • Can be class trouble-maker (in the sense that he was often told to be quiet and stop asking questions).
  • Had unusually early or late developmental stages (talking, crawling, walking, tying shoes).
  • Prone to ear infections; sensitive to foods.
  • Unusually low tolerance for pain.
  • Strong sense of justice; emotionally sensitive; strives for perfection.
  • Mistakes and symptoms increase dramatically with confusion, time pressure, emotional stress, or poor health.

Source: http://www.dyslexia.com/library/symptoms.htm
Font from http://www.dyslexiefont.com/

What dyslexia might look like 2
Source: ETNI-English Teachers Network

Having two brothers with dyslexia and a sister who worked/had worked at the Dyslexia Foundation in Norway, I knew what signs to look for and what needed to be done when it became apparent that dyslexia had joined our family. Early on I started telling educators what I suspected. Alas, being a parent with expert knowledge about one’s child does not in any way result in being taken seriously.

We went through kindergarten and seven years of Skjetten primary school doing their very best to ignore the problem and place all blame for failure on my daughter. For quite a few years home-schooling would probably have been the best solution for us (hind-sight knows all). It seemed as though I had to go through everything her teacher had taught over again at home. At home we had me read out loud the texts and take breaks when attention flagged. We were also able to discuss the topics we read and try out alternative ways of getting through the material.

Source: Gentle Stress Relief for Peace Health & Happiness
Source: Gentle Stress Relief for Peace Health & Happiness

As more and more written material had to be handed in, I helped her by going through his texts making sure he had remembered to punctuate, have a capital letter at the beginning of sentences, check spelling and split her sentences.

One of the problems for dyslexic with both reading and writing difficulties is that they tend to not punctuate. Not a single period, comma or capital letter in a whole paragraph. Add to that the letters that get turned around, words that are spelled phonetically, double and single consonants and more, and the need for someone to look through their work is obvious. I would read the text back to my daughter and ask her if that was what she meant. Sometimes we would laugh because her intended message was not the words on the page.

At times we quarreled about the meaning of the assignment. After a while, she realized that I needed to teach her how to decode the wording of assignments. Then we worked on how to set up an essay. Right away I need to tell you that I am absolutely not the best teacher when it comes to writing essays. Autism tends to take over and I write in bullets rather than paragraphs. But I do know what the textbooks state and that is what we worked with.

Poetry. Oh, how I hate analyzing poems. But we could work with the basics – spotting metaphors, allegories and type of rhyming. Analyzing other texts was no easier, but somehow all of this knowledge was placed into her head by us.

Artist: Tamara Adams
Family Reading Together – ethnic print of folk art original / Artist: Tamara Adams

We read together. Homework and pleasure reading has taken hours and hours of our lives. Audiobooks and practicing reading texts that interested him added to her sense of accomplishment and pleasure.

Now she has school-books for the blind (when they are available). Other than that, my daughter scans texts to be read by her reading program. When she comes home we sometimes read through material and talk about what on earth these incredibly wordy scholars are talking about. Without auto-correct her spelling is still unusual. Modern technology has made life a whole lot simpler for the dyslectic (unless they are unfortunate enough to have the kind that completely messes with their sight).

Having a neurodivergent mother has in this instance been a good thing for my daughter – especially a neurodivergent mother with a love for words. I don’t know if we could have done the same thing if my interests had been otherwise. My daughter and I were extremely LUCKY that our loves and struggles could work together.

We still read together – he is now 20. I write about those experiences on my book blog humanitysdarkerside.com.

Empathy once more

Credit TV2
Credit TV2

I’m still working on this empathy thing. As I am going to turn 50 next month, I figure it is about time I get some kind of handle on what empathy is. Perhaps something clicked inside my head these last couple of days.

Norway is something of a cross-country skiing interested nation. Sports aren’t my thing to watch, but my husband likes it. I managed to catch the last minutes of the winner, Marit Bjørgen’s, race along with her interview afterwards. This is when the click happened. If you take a look at the link to her interview, you will see that Marit is all teary-eyed about this victory. No wonder. This woman has worked intensely for years and finally she won Tour de Ski. Plus she is tired after the run. So, of course, she is going to get emotional about it. But she wasn’t the only one.

My husband also got a bit teary-eyed and so did the commentator and other television crew. Because my husband got teary-eyed, I’m just going to assume that other Norwegians watching the race also got teary-eyed. I did not. But something in me wondered if this mass phenomenon was a part of empathy as non-autistics think of it.

Credit: Momtastic
Credit: Momtastic

On facebook people place a lot of clips where they tell me (and others) that there will be need for a handkerchief. Somehow, I have never needed one. But others may have. I am wondering if this is also part of the empathy phenomenon – this getting weepy while watching something about helping others.

I remember telling a group of people about the abuse I had experienced as a child. Some of the people in the group were even angrier about the abuse than I have ever been. To me that seemed really uncomfortable at the time and somehow fake because the abuse had not happened to them or another person that they cared about. They were angry because it had happened to me as a child and it was for that child that they were angry. I’m still confused about the logic while writing this. But maybe this also has something to do with empathy.

Here is another definition of empathy:

the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another. (Dictionary.com)

What I am wondering is if it is possible to have empathy across neurological differences, such as AS and non-AS people. Because I’m not seeing it.

Credit: Cuteness and consequences
Credit: Cuteness and consequences

I’ve read blogs and postings by non-AS parents with AS children and blogs and postings by other combinations of AS and non-AS groups. What I have seen is a willingness to try to understand the workings of the other party’s brain but an inability to actually vicariously experience what the other person is feeling or thinking. Somehow it seems that crossing the line between AS and non-AS only brings confusion and a sense of the other being illogical and unfathomable. Add to that whatever conditions either party may or may not have in addition to their AS/non-AS and understanding becomes even more difficult.

One thing almost 50 years has given me is the realization that empathy is not a requirement for acceptance. Accepting other people for who and what they are without constantly wanting to change them into something else is something we can all strive for whether or not empathy is part of our neurological make-up or not.