Someone I know and respect very well has responded to this article but was banned from leaving a comment, so he posted it on his website. (Read it here: http://www.badour.net/autism/respect-long-overdue.html)
I too wanted to leave a comment, but my comment was way too long, so I've posted it here:
Looking at all the bickering I have seen thus far, I can tell you that no one is going to be of any use to those on the autism spectrum as long as this continues.
From my POV as someone who was diagnosed with autism many, many moons ago and who is an advocate for changing attitudes before we can actually be of any use to those on the spectrum:
1. One must understand the climate of the world of autism, which unfortunately is quite negative for the most part.
- Autism is still relatively new on the medical stage (first written about in 1943) and general medical knowledge of autism seems to have split between the behaviourists (autism is diagnosed by observable behaviour) and the biomedical supporters (I lean toward this but not toward the alternative medicine - I'm more interested in the autoimmune research that is going on right now). Until more is known about autism and the full picture is seen, there will be splits in the community about what is right and what is not.
- Because autism is still so "new" compared to many other conditions out there like diabetes, there is a lot of money to be made on it... and so many people do! Enter the snake oil salesmen with their potentially dangerous claims of cure, the behaviourists who charge $40,000 - $100,000 per child per year to force a child to just "act normal". These folks prey on parents who do what all good parents do: want to help their children and it's sick (in my opinion). They tell parents that they will "lose" their children if they don't sign up for their particular brand of therapy. They tell parents that there is a window of opportunity that will close. They threaten, cajole and scare parents. The parents end up forking out tons of money and perhaps even losing homes and such because of these people. How do these snake oil salesmen sleep at night??
- Speaking of money to be made: Societies use negative language in order to make money (who's going to give money to an agency that says "Meh... Autism's not really that bad..."?). Autism Speaks has not become as successful as it has from being positive or even cognizant of what autistic people are saying!
- Many of us on the spectrum who were diagnosed in the "bad old days" recall how we were treated: institutionalized, abused a la Lovaas and his "autistic people are not human in the psychological sense" opinion, strapped down, drugged, beaten, etc... and are understandably *not* happy! You may see the eloquent (and perhaps kind of snarky) writings and assume these folks are “high-functioning because they can write", but in some cases you could not be more mistaken! Some of these very eloquent writers have problems caring for themselves and require round the clock care while others are doing considerably ok on their own. That's why autism is on a spectrum, folks.
- The word "cure" has its own implications. Parents and professionals want it; many people on the autism spectrum do not. Again, the division bell rings. Why? It's complicated, like many other things with regard to the autism spectrum. Some people on the spectrum believe that a cure would take away who they are. They feel that it might take away the many good qualities that they have... and there are many great qualities no matter how a person "functions"!
In short: You get a division.
People are pitted against each other: parents, people on the spectrum, service providers, societies... it's like a weird war where there are not two sides fighting for a specific purpose, but everyone is just fighting each other for a number of reasons.
Fig. 1: I created the diagram below to illustrate how I see this conflict:
The autism world is a strange little place indeed! Autism is a strange condition in that incites such hatred, such negativity and such passion! Passion is great if it is used to actually help. What it does in most cases is cause more harm because of the negativity behind the passion.
My question is: how is this helping *anyone*? How is this serving the target client: people on the autism spectrum? How is this serving the families? How is this helping to allow proper scientific research to be done?
I'll tell you who the enemy is, and it's not autism... it's negativity and the massive amount of infighting going on that prevents any real progress from happening.
These are your enemies, ladies and gentlemen. A house divided is a house that is conquered.
There. I've done some complaining; now let's move on to something more productive.
Some problems have been identified. What are the possible solutions? Let's start there...
The first step, in my opinion, is to change attitudes.
Negativity on any side of this strange little battle helps no one!
The first attitude to change is the "I'm right and you're wrong attitude". Guess what? All of us are right in some respects, but wrong in others!
Example: Let's look at autism's history on the medical stage:
- In 1943, autism made its debut in the scientific world when Leo Kanner wrote a paper called "Autistic disturbances of affective contact". He made some interesting observations, such as: autistic children seemed very anxious but were very intelligent, there seemed to be at least one member of each family who had similar behaviour, the parents of these kids had, for the most part, brilliant minds and were a cut above the average in that regard (if not also a little aloof), autistic children are born not made (meaning, the vaccines and the aloof family members didn't cause this... autistic people are born that way).
- Bruno Bettelheim, a holocaust survivor, noted that autistic children behaved in a very similar manner to his fellow inmates in the concentration camps. The behaviour was that of someone who is in a state of high stress. Now, most of the kids he saw were not prisoners in concentration camps; they came from nice homes for the most part, so what was their problem? Bettelheim wrongfully (IMHO) blamed the parents. (I can see his point, who do little kids interact with the most? Their parents! But I also do not believe that the parents were the cause - well not their behaviour toward the child.)
- Enter Bernard Rimland from stage left with his biomedical theory. He made an astounding claim when he said that there may be a medical basis to autism! As the dad of an autistic child, he refuted the "refrigerator parent" theory completely.
- Enter the behaviourists from stage right and their "Applied Behaviour Analysis" AKA: "ABA". One thing that must be understood is that the school of behaviourism has never believed that behaviour is caused by an underlying condition. They believe that behaviour can be shaped, and indeed it can... but at what cost? Ole Ivar Lovaas based his behaviour analysis on BF Skinner's theories. (B.F. Skinner, by the way, kept his daughter in a box for the first two years of her life because he believed that providing adequate heat, food and water was enough to sustain a child... this same daughter would not allow him anywhere *near* her children as a result!) I have read many accounts from adults who unfortunately got treated by this man as children and now say they were quite abused. I myself was subjected to his style of treatment at the age of 2 and can attest that it did nothing other than scar me. It did not help at all!
- Andrew Wakefield, gastroenterologist, found that many autistic children had digestive issues: reflux, motility issues, etc. I agree with him on this case since I have these very same issues which cause a lot of my behaviours to worsen when I'm feeling sick. Then he published a study about the MMR vaccine... Wow! The poop storm this single paper produced was astronomical and is still raging to this day! I won't get into how he was ruled unfit to practice medicine or how his paper was retracted by the Lancet earlier this year. Neither of these have anything to do with this particular post. What I'm addressing is his finding of digestive issues.
- With the advent of some new technologies, scientists are finding some very interesting things about autism. Some are finding some genetic clues (which have got many on the autism spectrum in an uproar because of the whole "eugenics" factor. There is an ethical factor if people decide to abort babies who have that gene.). Others are finding autoimmune links. As you can see, autism research has gone in many different directions over the years and continues to do so. However, none seem to meet in the middle. Never the twain shall meet. All of these people, in my opinion, have got some things right, and some things wrong. Perhaps one day, things will begin to come together just like they have for other medical conditions and the quality of life for all involved on the autism spectrum might take a turn for the better.
The second thing that needs to happen is a shift in attitude. This is a not a "war". Autism is not the enemy. This is not the end of the world - seriously, people on the planet are all still alive and doing their thing even though your child is on the autism spectrum!
It is not normal for a person to be on the autism spectrum, so what does that make autism? A medical condition like any other medical condition that makes a person not function normally in one aspect or another. This is not to be negative, but to state it like it is.
Autism is a medical condition that has a lot of challenges because it is not the same across the board. Each autistic person is affected in different ways. This is why it is so frustrating for many people! It is a medical condition that is still so very new in the scientific world and not fully understood by anyone. Back when I was a kid, autism was rarer than rare. Now the diagnosis of it is so prevalent! There is so much yet to learn!
Negative undertones lead to negative thoughts and negative thoughts often lead to negative actions. This is why we see reports of autistic children being mistreated by caregivers, teachers and therapists... and yes, even parents! (If we want to get extreme, let's look at the cases where autistic children and adults have been murdered by caregivers... including parents.) Why is it ok to treat autistic children in manners that would be illegal if done to criminals in prison? (Judge Rotenberg Centre comes to mind)
It does not need to be this way!
Let's go back to some of the points from the beginning and see how the perspective could be positively changed in the climate of the world of autism:
- Autism is still new - Let's allow the researchers to do their thing and learn more about the autism spectrum...all aspects of it! Is it autoimmune, is it just a behaviour problem, is it caused by vaccines, is it caused by bad environment, etc.? Let them do the research and let them find out. A note to the celebrities who are pushing medical opinions or agendas: until I see you graduate with a genuine PhD in the field of autism (that involves obtaining a university degree in something other then PR or acting and actually spending many years engaged in proper research - this could take a while!), please stop it.
- Societies: Stop making the money on negativity - I am the chair of a board of directors in a local society. (Allowing more people on the autism spectrum a voice in the board of directors, by the way, might help your society immensely... it has sure helped us!) Our mission involves improving the quality of life for people on the autism spectrum by providing families with support and a network of all sorts of resources that might be of help. (Not a direct quote, but you get the idea) Notice there is no "boo-hoo" factor here? Our agency gets quite a fair bit of funding too! Ok, we're not the multi-million dollar entity that Autism Speaks is, but we're doing well enough. We offer hope, support and we want to improve the quality of life of those on the spectrum, however that may be. These are all positive things. We are accepting of people on the spectrum, we do what we can to accommodate their needs and we do what we can to provide a win-win situation for all involved (families, friends, workers, etc.).
- People on the autism spectrum are not clueless, stupid or unaware. They are quite the opposite from what I have seen. However, many are quite angry and for good reason. As one person said in the comments: "I have autism. Only I can know my own condition". Example: My parents think they know all about my autism, but they had no idea of the digestive issues, the painful acid reflux, the searing headaches or the neurological difficulties I faced throughout my childhood and still do. They are only now starting to understand... 32 years later, but only because I have explained it to them and they've been willing to listen (it took a long time for them to be willing, believe me!).
- Theory of mind and communication are both two way streets. It is often said that autistic people have no theory of mind. I find the same problem with non-autistic people. They don’t have a clue what it's like to be autistic anymore then an autistic person knows what it's like to be non-autistic. There. We now know that neither side understands the other very well. How do we change that?
Open the lines of communication and remember the big rule of communication: "If you want me to listen to what you have to say, you have to communicate it in the manner that I am most comfortable with."
That means:
* Autistics - If you want the NT's to listen, you have to speak at their level in a way that they are most comfortable. That means being polite and not being forceful, overly pedantic, rude or angry. NT's tend to tune out just as we do when they're using their flowery words, cliches and political correctness. If we want them to communicate with us on our level, then we have to reciprocate.
* Non-autistics - Please communicate in a manner that allows an autistic person to be comfortable talking to you. If typing works, then type. If sign language works, then use it. As a fellow person on the spectrum put it succinctly:
1. Stop misrepresenting or re-interpreting what autistics say.
2. Let autistics speak for ourselves.
3. Stop dismissing autistic perspectives as invalid.
4. Stop imposing artificial divisions among us.
5. Listen to what we have to say.
(From Bob Badour's website: http://www.badour.net/autism/respect-long-overdue.html)
There is much to be learned from both sides: NT's (non autistic people) can learn a lot about what it's like to be autistic and why their children do what they do. Autistic people can learn a lot about how to get by in an NT world and how we might best get the services and help we do need by asking the right questions or taking the right approach.
Let's open the lines of communication!
- Causes and cures: change the focus - Can we please focus on what actually helps a person on the spectrum? We are so stuck on cures, causes and negativity to raise money that we have lost sight of the real goal: to help improve the quality of life of people on the spectrum and those who care about them (parents, friends, caregivers, etc.) Leave the causes and the cures to the researchers. Focus on helping to improve the quality of life for people on the spectrum now!
A Quick Recap
1. This is not about who is "more autistic than thou"! From Amanda Baggs to Ari Ne'eman, autistics have stories, opinions, experiences and they deserve to be heard, respected and understood, no matter what their so-called "functioning level" is. They also communicate with each other a lot (check out newsgroups and mailing lists run by autistic people and you'll see lots of communication!)
What is so wrong with treating an autistic person with the same respect as any other human being? What is wrong with listening to them?
Does Ari Ne'eman not have his challenges? Does he not exert a lot of effort to be as "high functioning" as he appears? Has anyone considered that Ari Ne'eman might be in contact with lots of families and people on all parts of the spectrum and not just speaking for himself? I know for a fact that he is in contact with many people every day!
How is that unrealistic? If you start treating autistic people with more respect, they might do the same instead of being inspired to fight. Let's cease the power struggle and work together, shall we? Let's allow the eloquent among us to have a voice and let's help them by opening the lines of communication with them so that they might better deliver our message to those who need to hear it? (Everyone!)
2. Autism is not the enemy; consistent negativity, misinformation and division are.
To use a knight in shining armour analogy: Don the armour of understanding & acceptance, take up the shield of objectivity, wield the sword of curiosity and ride the steed called Hope and you will most certainly slay the dragon with the three heads of negativity, division and misinformation!
Only then will you be able to rescue the people in distress who have been menaced by that three-headed dragon for so long.
Only then can the people unite and make a positive difference in the climate of the world that is autism.
Only then can we be of true help to anyone involved.
3. Comparing to other medical conditions. Yes, Autism is a medical condition. It has its challenges. It is not a picnic for anyone, not even the person on the spectrum!
Diabetes or cancer, by the way, cannot be compared to autism (other than just being medical conditions themselves), so please stop doing it.
No one tells their diabetic child or child with cancer that they'll never amount to anything, or that they are a burden on the system or forces them to just "stop behaving like that!" through rigorous behaviour modification! They actually try their darndest to help their children *feel better* and improve their quality of life, not make them feel bad about a condition they cannot control and force them to pretend they are not that way.
Respect is a two way street. So are communication and theory of mind. Why don't we start opening the lines for all three?
Let's stop fighting. Let's start talking. Let's start actually helping!
Perhaps then we can truly make a positive difference...
