Category Archives: autism experts

An Autistic Child is Murdered

Another Autistic child has been murdered by one of his parents.  This time it is a six-year old, little boy named London McCabe.  London joins a growing list of Autistic children who have been murdered in recent years.

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”

Wow.

“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

She then went on to say, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated.”  This horrifying statement is untrue, but beyond that, the suggestion that if our feelings are not reciprocated, it makes sense that we become murderous, is to make us so narcissistic, so incredibly monstrous as to be unbelievable.   This is Bruno Bettelheim’s famous “refrigerator mother” theory reapplied to Autistic children and it is just as awful in this new version as it was in the original.

Most Autistic children feel love for their parents, just as most non-autistic children do.  Even when their parents behave horribly toward them, even when they’ve been treated with contempt, ignored, bullied, ridiculed and publicly shamed by those who say they love them, even then, most children still love their parents.  As they grow older many may have more complicated feelings of despair, abandonment, become distrustful, anxious and terrified.  The idea that Autistic children do not feel intensely is an outrageously, misinformed idea.  Just because someone does not reciprocate in a way non-autistics understand, recognize or expect does not mean the feelings do not exist. 

It is extremely disturbing to read such a statement coming from someone who is treated with deference and as though she is an authoritative voice on the topic of autism and Autistic people.  This professor is one of a number of people who has a degree in psychology and has made inaccurate, misinformed and mistaken statements about autism and Autistic people, yet none stop to ask what the psychological damage is to the Autistic children and adults they demonize with their incorrect statements, not to mention the impact such statements have on a misinformed public.  Unfortunately, few seem to be asking any questions about any of this or even bothering to find out if such statements are true, including the newspaper that published her comments.

There is an increasing number of Autistic men, women, teens and even younger people who are writing about their experience of life, their relationships and the world.  I am surprised when I meet someone in the field of autism who does not follow at least some of the blogs so many Autistic people are writing.  The Resources page of Emma’s Hope Book has dozens of links to Autistic people’s writing.  The first 28 blogs listed are written by non-speaking Autistics.  One of those people is my daughter, Emma.  After a presentation Emma gave in New York City a few months ago, she and I had the following conversation:

Emma:  I hope people will question what they have been told.
Ariane:  I do too.
Emma:  Horrible ideas about people, cause many to do terrible things…
A little later in that same conversation, Emma typed, “Worry and fear are fueled by furious words spoken harshly.  Humor soothes, shining sunny rays spreading hope.”

As the mother of an Autistic daughter who cannot communicate fluently with spoken language, but communicates beautifully by typing, I am continuously shocked by the inaccurate information that is rampant on the topic of autism and Autistic people.  Yesterday Emma typed, “Understanding that all human beings want connection is natural and fundamentally human.”  And last week Emma wrote, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

For people who do not have the ability to communicate with spoken language and/or have sensory issues that impact each individual differently, expecting them to respond the way people who do not have any problem speaking and have never been assaulted by their environment, is relying on a false idea.  It is this false idea that continues to misrepresent so many.  It is this false idea that serves to hurt Autistic people.

The psychology professor told NBC News that mothers do not have the experience of their love returned by their child.   “That is one of the most difficult things for mothers” she told the reporter.

If this were true, it would be hard.  Years ago, when I once believed a great many things about my daughter, that I now know are not true, it was an awful feeling.  But it is far worse to be that child who loves, but is believed incapable of love.  It is far worse to be so thoroughly misunderstood, to be constantly misrepresented in public, to be thought so problematic that people sympathize with the mother who murders you… that is far more horrific than anything I will ever experience in this world.

London McCabe

London McCabe

Parenting an Autistic Child

One of the most difficult things about being a parent to an Autistic child is the realization that almost everyone we parents come into contact with, when getting the diagnosis, have ideas about autism and what that means for our child, regardless if their ideas are based in fact.  So many people have theories and opinions about what autism is or isn’t.  There are endless charts and check lists meant to be helpful, yet they are all skewed and written from the point of view of a non autistic person or someone who uses spoken language to communicate.

Once you begin the evaluation process you are asked hundreds of questions.  Questions such as, “How many words does your child know?”  We answer these questions to the best of our ability and from the perspective that “knowing” means “speaking”.  Zero, or maybe five, ten, oh perhaps twenty, we say with wavering confidence and this answer is then noted.  “Does your child show interest in others?”  “Does your child engage in imaginative play?” We are asked.  And again, we do our best to answer honestly from what we’ve witnessed or believe we know.

But if we use spoken language, we answer these questions from the perspective of one who speaks, not from the perspective of one who does not.   The idea that someone might be unable to speak, but knows a massive amount and can learn to write to communicate or someone might have a difficult time translating words, whether written or spoken to match their non word thinking, is never brought up. As parents, we do not hear this idea voiced and yet it is crucial to our understanding of our child.  How different we might feel and understand our child if we were told that this may be our child’s experience of the world.  We could be told about the body/mind disconnect and how that might manifest itself.  We could be given the words of non-speaking children, teenagers and adults to help us understand.  Why are parents not being informed of this?

Instead your child is observed, notes are made and a diagnosis is given.  We parents are left with a word, laden with opinions, ideas, but few facts.  People talk about the “science” behind various “treatments” and we are told that the only scientifically proven method is x.  We are told that we must hurry as the window to help our child is quickly closing.  We rush ahead, madly, blindly, we do as we are told.  There’s no time to wait, to find other opinions, we must hurry, hurry.  We feel the guilt and the horror of not doing enough.  We must engage our child in a specific way.  We must urge them to complete puzzles and force them to play with dolls or farm animals, we give them treats so that they’ll comply, we buy play kitchens and a variety of toys and when they finally show an interest in one, we watch to be sure they don’t show too much interest.  Too much interest is a red flag, we are told.

When things do not feel right to us, we begin to do more research, looking for answers and we begin to form our own opinions about what’s really going on.  But for many of us we just feel terror and confusion.  Well meaning people give us advice.  We are sent links and the names of specialists.  Suddenly, many of us are deeply immersed in that surreal world of “alternative” medicine.  Each person we see speaks with the authoritative voice of someone who knows, who understands, who is convinced this will make our child “better”.  Yet few question what that word means.  What is “better” and what does “better” look like for my child?

The sinking feeling that something is terribly “wrong” embeds itself into every fiber of your being. Almost everything you read about autism confirms that sinking feeling.  This is a terrible thing that has happened.  It makes sense that  to you and your family, the focus is on “righting” what is wrong with your child.  A child whose life would be so much easier were they neurologically like the majority of the world.  But they are not neurologically like the rest of the world.   This one fact is overlooked as we continue to pursue all that we are told and advised to do.

How do we conceive of something we do not understand?  How do we see something we’ve not heard of or ever believed possible?  How can we understand a neurology that is so different from our own?  Autism.  What does that mean?  What does it mean for my child?  How do we support our children so that they flourish?  How do we best raise an intensely sensitive being who does not necessarily use words to think?  These are the questions I would like to hear educators, doctors and all those who feel they are experts answer.

The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem.   We are raising a population of children who are internalizing the awful message given to them…  Our children, who will grow up to be Autistic adults, are getting this message from almost everyone they come into contact with from the moment they are given the diagnosis.  It is a message that is hurting our children and hurts all Autistic people.  Our children, whatever their neurology hear it,and those who have internalized it may go on to deliver it too.  It is up to us to change the message.

Ask a parent what they want most for their children and most will say, “Happiness.”  Yet so much of what we are told about autism and our Autistic children is ensuring the opposite outcome.

"I don't want to talk about it!"  ~ One of Emma's favorite spoken comments

An Argument Against Pathologizing Autism – What Others Had to Say

In yesterday’s blog post I asked for thoughts regarding the pathologizing language that dominates most conversations about autism and those who are Autistic.   I received some terrific responses both here, through email and on Emma’s Hope Book Facebook page.  I also asked Emma for her thoughts, which she very patiently gave me and generously said I could post here.

Emma wrote, “Deciding autism is a medical condition eases the minds of those who profit from it.”

A couple of great links were sent to things that have been written on the topic or related topics.  This, from the Zur Institute entitled:  DSM: Diagnosing for Status and Money, focusses on the DSM and argues, “Historically, many clinicians have been unaware that the DSM is more political than scientific, that there is little agreement among professionals regarding the meaning of vaguely defined terms, and that it includes only scant empirical data.”

Another link sent was this one, Time to let go of the medical model by Jarrod Marrinon, which does not speak specifically about autism, but is certainly still relevant.

And this link from Nick Walker’s blog, Five Steps Toward Autism Acceptance is terrific with the first step being, “De-pathologize autism and Autistic people.  This, in particular, stood out, “Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations.”

Nick’s words were similar to what Emma wrote when I asked, “What do you say to people who need support and assistance in their daily life?”

“Why should they have to fight anyone to receive the help they need to live?”

I said, “Well, in an ideal world they wouldn’t need to, but some say that there is only so much money and available resources, so people need to prove that they need the help more than others.  In effect they are being forced to compete for the money that’s been allocated.

Emma wrote, “This sounds like an excuse so that people who do not need help can feel better about how others are treated.”

David wrote, “The obsession with behavior as the be-all-end-all of autism “science” and “treatment” is a superficial distraction and a formula for spectacular failure in addressing the underlying realities – both impairments and abilities alike – which Autistics experience and must cope with every minute of every day. The temptation to pathologize and treat behavior for its own sake is dangerously misleading and utterly beside the point. That boilerplate approach to autism HAS GOT TO GO.”

Toddynho wrote, “why pathologizing autism is harmful”

Compare and contrast the life experiences of LGBT people in contexts where homosexuality is pathologized and in contexts where it is not.

“Are there any studies showing the direct links to pathology language and harm and abuse of the people who are being pathologized?”

To me, it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.

“If we do not pathologize autism how will the people who require assistance receive it?”

On a massive, massive scale, the adult autistics who require assistance are either receiving no assistance whatsoever, or the meager assistance being received is grossly inadequate if not downright harmful.”

Toddynho goes on to say, “What we have is a society that is pervasively pathological. Addressing the most acute societal pathologies will improve things for autistic people broadly much more and much faster than any kind of autism-specific “assistance” strategies ever will — and moreover will make things a lot better for most non-autistic people too.”

Gregg wrote, “Its a false logic really. There is nothing inherent to medical model understandings of Autism that enables support. Just the opposite really Its well documented that social model understandings enable supports that are far more useful to autistic people. I see no value in pathologizing Autism except to the industry that has been built up trying to take advantage of parents of Autistic kids.”

I believe the medical model, which is the model used in almost every university and by most autism professionals does tremendous damage to the very people they are intent on “helping”.  To repeat what Toddynho wrote, “…it’s self-evident and obvious that groups that are pathologized on the basis of their way of being are harmed and abused in consequence.”

“Do you think pathologizing language is harmful?” I asked Emma.

Emma wrote, “Justifying decisions to ignore those who need help is not reason to make people feel ashamed of their existence.  People need encouragement to do good.  There will always be some who cannot, but this is not a good reason for everyone else to stop helping each other.”

 

From: ukdisabilityhistorymonth.com

From: ukdisabilityhistorymonth.com

 

Your Child’s Been Diagnosed. Now What?

I always think I’ve written something already about any given topic only to realize there is more to add.  So it was the other day when asked about advice for a parent whose child was just diagnosed with autism.  This is a question that comes up often and always when asked I hesitate and here’s why.  For every child that might respond to various “interventions” the way my daughter did, there will be countless others who will not.  The therapy may be worse or better.  The child may have different sensory issues, they may be voracious readers, hyperlexic or they may not be able to see the printed word because of visual issues, the letters may swim on the page until a different background is found or some other tweak is done, which allows everything to stay still.

There may be auditory issues that my daughter does not share, tactile, physical issues and the list goes on.  So what to do?  How does a parent wade through all the opinions?  How do you find a way to quell your fear, respect your child, ignore that list of all that’s wrong and find the things that will help your child flourish?

For me it boils down to two essentials.  The first is to presume my child competent.  I’ve written about this concept a great deal, but here are a few posts which talk about what that means – ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  Presuming competence is very much a work in progress.  What I once presumed as “competent” my daughter has shown me didn’t go nearly far enough.  We do the best we can with the information we have.  But anything intended to “help” my daughter, anyone who is going to be spending time with her, must understand the concept and be committed to putting it into action.  This includes, speaking to her and not about her in her presence.  It means, even if the child shows no sign of understanding, even if the child has no spoken language and has never written a single word, we assume they can understand more than their bodies and gestures and utterances indicate.

Presuming competence has evolved for me and is helped by keeping my fear, judgment and assumptions checked at the door.  I cannot presume my daughter capable if I am simultaneously engaged in a running list of all she’s doing wrong.  I cannot practice a presumption of competence if every interaction I have with her is really an ongoing test where I’m insisting she prove herself to me.  Presuming competence is a life long practice and it is has far-reaching implications for not just my daughter, but all human beings I come into contact with.

Presuming competence is key, without doing this, everything else I do, no matter how great my intentions, will fall flat.  I have to believe in my kid.  It means that I speak to my child the same way I would speak to any child their age.  It means I approach my child believing in their ability to learn.  It means I believe they can and will learn.  It means they will communicate, I just have to find the best way to support them so that they can and it may not be with spoken language.  It means any therapy, no matter how popular, must be based in presuming my child competent, respecting my child’s process and treating them with the same respect I would insist on for anyone coming into contact with my non autistic child.  It means I have to do the inner work regarding what I believe, notions of should and shouldn’t, entitlement, prejudices, and whatever ideas I may have about my child and who they should be.  It means I approach my child with love, consideration, respect and curiosity.

I have come to believe that services, those services that everyone talks about and that are centered on our children, should include services for parents.  Early intervention for parents is crucial and much needed.  We parents are often in greater need of help and support than our children.  Good quality respite care, therapy for us, the parents, designed to help us cope and sort through our messy emotions so that we are in a better position to be there for our children.  I needed support from parents who’ve traveled the path I now found myself on.  No parent should ever feel the kind of fear I once felt.  Which means we have to change the current conversation surrounding autism if we are going to help our children.  No one is helped by having their every flaw (which is completely subjective, by the way,) scrutinized, both publicly and privately.  There are ways to get support and the help we and our kids need without demonizing our children and talking about them in ways we would never allow people to speak about our non autistic children.

Which brings me to the second essential thing – Autistic people.  It is imperative that all parents be given a list of blogs written by Autistic people who are describing their experience of the world.  This has to be essential reading while we figure out a way to put into place advisory programs made up of Autistic adults who are able to help parents understand their children.  These must be paid positions just as all other people involved with early intervention are paid.

We need mentorship programs of Autistic people mentoring our kids AND mentorship programs where our Autistic kids are mentoring younger Autistic and non Autistic kids.  One of the most valuable relationships my daughter currently has is with a little boy who shows no signs of being Autistic himself.  But they enjoy being together and the boy’s parents encourage their relationship. An inclusive society is key as we move forward.

On the Resources page of this blog I’ve put together a fairly extensive list, beginning with non-speaking Autistic people’s blogs.  I am always adding to this list.  I encourage all parents to start clicking on those blogs, find the ones that resonate and speak to you and follow them.  Start commenting on them, reach out to others who share your child’s neurology, develop relationships.  Listen and learn.  You will learn more from doing this than anything I learned in the half-dozen years I spent listening and reading non autistic people’s opinions.

And finally this is a short list of what I consider essential reading/viewing for anyone who has an Autistic child.

Wretches and Jabberers
Ido in Autismland
Intense World Theory of Autism

Emma and Teddy

Emma and Teddy

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

Emma and Laura

Emma and Laura

Emma and Ibby

Emma and Ibby

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

Emma and Henry

Emma and Henry

Autism Graphics

In the last two days I have been sent two different graphics supposedly about autism, but that upon reading take my breath away because of their blatant inaccuracies and biases.   The last one was in the shape of a pyramid in a shade of blue I’ve come to despise with the heading, “Impairment in Imagination” and I just wanted to cry.  Impairment in imagination?

You have no idea how much I wanted to hit the delete button and scream or bite someone, which always reminds me of a scene in the British comedy, Shawn of the Dead where the main character’s mom is bitten by a zombie, but she doesn’t say anything until her son asks, “Mom, are you okay?  Did he get you?”  And the mother smiles weakly, as blood gushes from her arm and replies, “Well, he was a bit bitey.”  Hilarious.  Only what I was feeling when I read “Impairment of imagination” was not hilarious.  No.  Not at all.

Underneath that unfortunate heading was written, “Deficits in flexible thinking regarding interests, routines, perspectives and rules.”  Two key words are used in these first two sentences “Impairment” in the heading and “deficit” in the second.  The first is just incorrect and the second is a stereotype that while it may be true for some people it certainly cannot be stated as fact for ALL people.  I purposely did not say “Autistic” people because rigidity and a reluctance to see another’s point of view are things many human beings have trouble with and this is not something that can be pinned on one specific neurology.

Below this, the graphic reads, “does not understand other people’s points of view or feelings.”  Again I could list a number of non autistic people in the news who would certainly be terrific examples of this sentence.  To suggest that this is a defining characteristic of Autism is inaccurate and plays into the whole “lacking empathy myth” that so many believe as fact about Autistic people.  Please read Drs Kamila and Henry Markram’s Intense World Theory of Autism for another thought regarding autism.  And by the way, the Markram’s, both of whom are neuroscientists, call it a “theory” because they understand that it is not scientifically proven fact, but a theory they developed and continue to tweak as they learn more.  They are highly regarded, acclaimed, well published and the two people working in the field of autism whose work I believe will eventually change how autism is viewed.

The next line of text on the graphic reads, “Agitated by changes in routine.”  This line would actually be fine if it weren’t for all that precedes it.  But I would also suggest that this line could be said about all young children.  And in the end this is my criticism of the information that is being given to people about autism.  Autism as defined by a list of deficits that added up does little other than to create panic in parents of Autistic children.  I’ve written about this before ‘here‘, ‘here‘ and ‘here.’   These posts are just a few examples of things I’ve written describing what fear did to me and why terror does not motivate people to make good decisions or help them decide how they can best support and encourage their children to be all they can be.

This particular graphic goes on with headings of:  “Impairment in Social Relationships,” “Impairment in Social Communication” and at the base of the pyramid the heading says:  “Additional Difficulties” where they list, among other things, “Appears to enjoy being held/restrained…”  NO!  This is absolutely wrong.  You cannot write that someone “appears” to “enjoy” “being restrained” thereby justifying sadistic behavior done by staff/therapists/parents/ANYONE.  And again, I  want to SCREAM!  Who is writing something like this?  This is a graphic that is being used by a school for Autistic children.  It is a graphic that is stating things as though proven fact.  A graphic that parents, children, educators are seeing.

We have to ask ourselves – WHAT ARE WE DOING?  How is it okay to publish such statements as though they are fact about a neurology that the best neuroscientists in the world are baffled by?

Please.  If you are confronted with a graphic that is anything like what I’ve just described, do NOT share it.  Do NOT believe that these things are a fact, just because they are written as though they are.  Do not add to the misinformation by repeating it.  DO NOT.  It is statements like this, one page info graphics written by non autistic people, who are not neuroscientists, who seem to know very little about autism that cause tremendous damage to the Autistic population.

We must all become critical thinkers when it comes to information about autism. We know very little about the human brain.  The best and smartest neuroscientists in the world are working hard to gain a better understanding. Most of what we are being told are theories, please let’s not treat these as fact.

Emma ~ 2010

Emma ~ 2010

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Unstrange Mind – Schools Supporting the Idea that…

I Used to Believe…

The degree of arrogance displayed by more than a few who claim to be “experts” with decades of hands on experience in the field of autism is absolutely staggering.  Their arrogance is only rivaled by their mindset of assuredness. They are unwavering in their absolute knowing about a neurology that continues to baffle the best neuroscientists in the world.  These practitioners not only speak from a place of “authority” they are imperious, contemptuous and profoundly scornful of any who suggest they might want to consult with a few people who are actually living their lives with the neurology these so-called experts claim to understand and know all about.

We have run into more than a few of these professionals over the years.  These are the people who fill me with fear.  They come into contact with hundreds and thousands of children over their decades of “expertise” and it terrifies me.  They win grants and are paid to speak at conferences.  Their opinions are sought by a great many.  They swagger about with their self importance, wearing their years of working with the Autistic population as though it were a badge of honor.  They think nothing of grouping an entire neurology into a small, convenient box labeled “autism”.

They smirk and posture and plaster their walls with their many credentials and degrees.  They make sure everyone understands exactly how many years they’ve been working in the “field.”  They say things like, “autistic children are…” accuse those they disagree with of “falsehoods” and go on at length about how they know what “autistic children” want, need and care about.  They are profoundly dismissive of those who actually ARE Autistic and who dare question or disagree with them.  Instead of listening to the very people they claim to know so much about, they silence with words of contempt.  They attack.  They strike out, bring in reinforcements of like-minded colleagues.  Sometimes they even target someone, almost always someone who is autistic, and try to do damage to them by contacting their employers, or those they have professional contact with.

I used to be shocked that such people would choose to be in a profession where the people they are supposedly wanting to help, end up being the very people they silence and hurt.  It used to surprise me when I would read comments by people who have no trouble using language either written or spoken to get their point across, dismiss and question someone who does not enjoy the same ease with which they do, to communicate.  I used to be naive enough to believe those calling themselves an “expert,” and had degrees suggesting study and dedication in their given field was further evidence of their title.

I used to believe in a great many things.

*This post is not about any one person, but about the dozens of people I’ve met over the years who fit the above description.  There are many people, both autistic and non autistic, who have dedicated their lives to autism, who (thankfully) do not fit this description.  They are open to new ways of thinking, they are actively listening to those who have different experiences than their own.  All of them are engaged in learning, discovering, uncovering more information and examining what they think.  They are operating from a place of humility, and to those people I am profoundly grateful.

facts
Related posts from others:

Cart Before the Horse Research ~ By Michael Forbes Wilcox