Outgrowing Autism and the Hype of a New Study

The latest big autism story is a new study by University of Connecticut psychology professor Deborah Fein that claims some children with autism can not only lose their diagnosis as they get older, but become indistinguishable from typical peers. Fein assessed 34 adults who had been given an autism diagnosis as children, many of whom had received behavioral interventions and were deemed to have “optimal outcomes.” As young adults, the study subjects were found to have “no current symptoms of the disorder” and to be “functioning on a par with their mainstream peers.” 

This has led to an onslaught of headlines about children “outgrowing autism” and becoming "cured."  While initially reticent to open this Pandora’s box, I have felt increasing compelled to put in my two cents worth on the controversy. 

First of all, while this premise may never have been scientifically proven before, it is not fresh news. I remember listening to Dr. Tony Attwood roughly seven years ago as he described high functioning autism existing on a spectrum from severe dysfunction to becoming a personality trait. This is not a passive experience of merely “outgrowing” something as you would the myriad immature behaviors of childhood, but an active and sustained effort over the course of years to resolve problematic issues inherent in having autism. Significant is the fact that the study subject had all engaged in intensive behavioral therapy which help them to adapt to the neurotypical world, or “play the game," as it were. While in no way disparaging behavioral therapy and successfully functioning in the larger world, this is not indicative of no longer having autism. A high functioning person with autism still carries the joys and burdens of it for life. They may shed a clinical diagnosis, but autism is still the prism through which they experience the world. 

This leads us to another issue.  Many consider autism a source of pride and would no longer shed it than they would an ethnic heritage or distinctive physical trait. This brings to mind a time when one of my high functioning twins was asked to write a two page essay on what it’s like to have a disorder.  He wrote the single sentence, “It’s like having brown eyes."  That phrase is enshrined in my heart and mind. 

Like the subjects of the test, my son passes for "normal," is successful in school, beloved by his high school teachers.  But the myriad social interactions and pressures he successfully fields each day leave him utterly exhausted in a way his neurotypical peers will never experience.  While he has acquaintances in his classes, he true sense of belonging is derived from the Robotics Club, where he gathers with other "nerds."   He still gets a PE exemption from the agony of team sports and will never go to a school football game.  Is he proud to have shed the identity of being autistic, that he passes for neurotypical? Yes and no. He doesn’t want to be defined by his autism, but he is very proud of the distinct gifts it bestows, his unique take on the world, his piercing intellect when it comes to his special interest.  He is at peace with himself. 

I believe the take away from the Fein study is but a confirmation that within the course of a lifetime, all children with autism can and will grow and change within their personal, idiosyncratic spectrum of possibility.  Studies like this can raise hopes of a “cure” and subsequently dash the hopes of parents whose kids don’t experience similar outcomes.  Concomitant feelings of regret are a risk.  “If-only” mantras could afflict parents who didn’t give their children intensive behavior therapy as the “successful” test participants reported.  For what it’s worth, my son never had behavior therapy and didn’t even have early intervention.  

There is no rubric for autism parenthood, just unconditional love and devotion.

Theater of Possibility for Autism

Seattle theater artist and playwright, Lauren Marshall, has developed an amazing class for both neurotypical and special needs children. Entitled “Theater of Possibility," Lauren synthesizes what she has learned as a mother of two daughters on the autism spectrum with Relationship Development Intervention (RDI) and “Theatre of the Oppressed," a movement that employs theater as an agent of social change. 

RDI is a parent-based therapy that addresses core deficits of autism such as emotional referencing, social coordination, flexible thinking, declarative language, foresight/hindsight and relational information process (the ability to solve problems that have no right or wrong solution). Having realized the shortcomings of ABA (Applied Behavioral Analysis) in creating more than mimicked skills in her daughters, Lauren turned to RDI to fill in the “why” of performing social behaviors. For instance, her theater games require participants to utilize eye contact and read facial expressions in order to know what to do next, teaching non verbal communication in a playful, effective manner. 

Lauren also infuses her curriculum with the principles of Augusto Boal, the Brazilian founder of “Theatre of the Oppressed” who maintained that “oppression is when one person is dominated by the monologue of another and has no chance to reply."  He created the concept of using theater as a means of empowering audiences and performers alike. The heart of Boal’s work is the spect-actor, the audience members who are asked to join in problem solving the dilemma presented onstage.  Major techniques of “Theatre of the Oppressed” that Lauren draws upon include: 

Forum Theater – A problem solving technique in which an unresolved scene of oppression is presented. It is then replayed with the audience invited to stop the action, replace the character they feel is “lacking power”, and improvise solutions. This structure can be used to explore past and current situations, or as a rehearsal for a future event. 

The Cop in the Head – Techniques that help individuals explore the internal voices, fears, oppressions that prevent him/her from living fully. Rather than focus on external oppressors (“cops”), these techniques bring to light the “cops” inside one’s head. 

The Rainbow of Desire – A technique which deconstructs one person’s story of tension in a relationship – parent/child, employer/employee, lovers, friends, etc. Using Image Theater, we then identify and bring to life the various conflicting emotions — the fears and desires that are happening inside the characters. The process very quickly goes beyond the individual story into an exploration of the group experience and the “rainbow” of who we are. 

Lauren’s ability to bring together kids with diverse needs and have them work harmoniously is an outstanding part of her class. Neurotypical kids and those with various degrees of challenges strike a chord of true mutual understanding and appreciation.  

My sixteen-year-old son has never fared well in the classroom setting and when I sent him off to the first meeting of Theater of Possibility, I fully expected a cell phone call telling me to come get him soon after I left.  Instead, at the end of the class I heard “what a joy he is to work with!” I couldn’t believe my ears.  When his class gave its final presentation, my other son balked at having to attend, but soon he was joining in onstage, having the time of his life.  He signed on for the next session. 

When our kids thrive at something they attempt, it’s a such a joy.  Improvisation affords them the opportunity to learn social skills obliquely and act out their inner lives instead of acting out.  

To read an interview with Ms. Marshall and hear about my son’s scene as “The Disaffected Boy” go to:  http://www.seattleschild.com/article/the-theater-of-possibility

Autistic Girl Seized by Canadian Government Heading Home

Ayn Van Dyk

Ayn Van Dyk

Of all the sad autism stories I have encountered, perhaps none has haunted me more than that of Ayn Van Dyk, the ten year old Canadian girl who was abducted from her school by Canada’s Child Protective Services.  As this site has documented in the past, Ayn had been successfully found safe and sound after a wandering incident at her home, but authorities seized her and put her in state custody “to lighten the load” of her single father of three.

While in custody, she was heavily drugged on anti-psychotics as her frantic father Derek, fought tirelessly for her release. 

So it was with great trepidation that I recently set out to learn what had become of her in the many months since I had followed the story.  To my great and utter delight, the Freedom for Ayn blog has reported that the family’s horrible ordeal of more than five hundred days is now drawing to a close.  Ayn is coming home very soon. 

While details are scant, it appears that her father finally had his day in court. 

In a time when we’re overdue for good news, this is indeed a candle in the darkness. Ayn won’t be the same little girl who wandered out of her yard so long ago and the damage to this family has been done, but at least now the recovery and healing can begin.

For more details on Ayn’s story, here’s a timeline of previous posts that shed more light on her and her family’s plight:

The State vs. Autism Families – June 26, 2011

Nine Year Old with Autism Still Being Kept from Her Father – July 17, 2011

Update on Child with Autism Removed from Home – August 4, 2011

Child with Autism Taken by Authorities, Remains in Custody - January 29, 2012

Agency Involved in Autism Case No Stranger to Controversy – February 13, 2012

Justice Sought for Autistic Girl Seized by Canadian Government - March 12, 2012



UPDATE —  WE RECEIVED THE FOLLOWING NOTE FROM A REPRESENTATIVE AT PROTECTING CANADIAN CHILDREN:

Yes, Ayn is coming home to her daddy and 2 siblings. Derek, however, did not receive his day in court… Actually, MCFD entered with a deal to avert a trial just days prior to a scheduled hearing. An agreement was reached in which the Ministry conceded, no finding of need to intervene existed! More than a year and a half has transpired since the nightmare began; an unacceptable delay of justice.

The story of Derek Hoare and his little girl, Ayn, is a tragic one; one that sadly, is afflicting many Canadian households: Children with disability, such as Autism, are being herded under the scope of Child Welfare Intervention despite absence of negligence or abuse.

SAMANTHA’S LAW in the neighbouring Province of Alberta could have averted this tragic demonstration of Ministry’s ignorance towards the disabled community in British Columbia. Caring families dealing with issues of medical and developmental diversity must be handled distinctly from the Child Welfare Intervention Model.

Sincerely,

Velvet Martin,
Spokesperson for Protecting Canadian Children
http://www.protectingcanadianchildren.ca

Autism, Adulthood and Transitional Challenges

Autism Transition

The tragedy in Newtown, Connecticut shines a light on the need for exceptional care of autism spectrum students as they transition out of public schools and into adulthood. We see this phenomenon come into play as Adam Lanza is said to have spent two years living in isolation in his basement, largely playing violent video games in the run up to the shooting. 

Having recently withdrawn my son from his high school, I can relate to Nancy Lanza leaving the school system and know firsthand what a toll it takes on both child and parent being isolated together in the wake of that. I keep my son monitored through counseling and engaged in a handful of activities we’ve found in which he enjoys success, but it’s still very hard for him to not be in school like other kids his age.  At sixteen, his future is uncertain. 

Schools are legally obligated to take care of our special needs children until they are twenty-one.  So why would parents like me cut loose of the safety net of proffered transitional services? 

The truth is, we have become fed up with our children’s school systems being unwilling/unable to meet their needs and assuming an adversarial stance against us.  Two camps who should be arriving at what is best for the child become locked in mortal combat. Faith is broken and as a result, we have cut our losses and retreated from the battlefield. 

For myself, I suspected there was little to be lost in doing so.  If transitional services are anything like other educational services we’ve endured, we would be better off without them.  The Department of Vocational Rehabilitation was the named clearinghouse for my son’s future, but his unique profile of strengths and weaknesses did not match what they had to offer.

Fortunately, wonderful readers to my previous posts responded to my plight and gave me a lead: The Center for Change in Transition Services here in Seattle.  Their website reports that transition services are a set of coordinated activities designed to be a results-oriented process that facilitates the successful movement from school to postsecondary living. These activities are based on a student’s needs, strengths, preferences and interests. Transition services include instruction, related services, community experiences, the development of employment and other post-school living objectives and, when appropriate, daily living skills.  I am eager to call them after Christmas.

I looked for a state-by-state guide to transitional services and found a “Resources Roadmap” at http://www.autismafter16.com. There’s also the ASAN (Autistic Self Advocacy Network) which has education and employment among its many topics. Founded by Ari Ne’eman, President Obama’s 2009 appointee to the National Council on Disability, ASAN is on the cutting edge of viewing autism spectrum disorder as a major civil rights movement of our time.  They partner closely with businesses to expand opportunites for individuals on the autism spectrum. 

If anyone else has more links to share, please do so.  It’s time to pool our knowledge and help each other through these difficult days.

Restraint and Seclusion: The Dark Secret of American Schools

I recently examined the events in Newtown through the lens of special education in this country, contending it is a broken system in need of as much attention as gun control and mental health. Out of that sprang a question in my mind, “In the last year, how many special needs children died in our schools at the hands of adults charged with their care?” 

It took me a long time to find an answer, and the answer is I couldn’t find a definitive one.

A hodgepodge of statistics gathered by various groups demonstrates that there is no national system of reporting serious and fatal incidents involving restraint and seclusion in our schools. States vary as to whether they even have rules and regulations governing interventions in the school setting. Many injuries and deaths go unreported. The best information we have comes from a report issued by the U.S. Government Accountability Office (GAO) in 2009 estimating that over 200 students have died as a result of school based seclusion and restraints between 1999 and 2009.

Then on May 27, 2009, The Council of Parent Attorneys and Advocates (COPAA) issued a report, “ Unsafe in the Schoolhouse: Abuse of Children with Disabilities,” which contained the horrifying statistic that 68% of the students who were subject to seclusion or restraints were diagnosed with autism or Asperger’s syndrome. In other words, brute force is applied in lieu of best practices in dealing with our children’s autism

Restraint and Seclusion: Resource Document (US Dept of Ed, May 2012) puts forth a concerted effort to address these serious issues. The report makes clear that restraint and seclusion are intended only as a means of last resort, when the child is of imminent harm to himself or others. Aside from physical harm that can culminate in death, restraint and seclusion psychologically mar the child, and as a strategy provokes the behaviors it is intended to stop. Tragically, restraint or seclusion are often used as a routine means to address instructional problems or inappropriate behavior such as disrespect, noncompliance, insubordination, etc., as a means of coercion or retaliation, or simple convenience. Lack of training is cited as a huge element in harmful and deadly incidents. The report goes on to conclude that positive behavior supports must supplant restraint and seclusion. A comprehensive list of fifteen guidelines are laid out, but the document lacks muscle. 

Unless and until there is national legislation, there will be no enforceable protections. Sen. Thomas “Tom” Harkin [D-IA] recently introduced S. 2020: Keeping All Students Safe Act, but lawmakers have indicated no plans to take up the issue. Indeed, govtrack.us gives us a dismal prognosis that it has a 34% chance of getting past committee and 6% chance of being enacted. 

How many more children will be psychologically damaged, physically injured, or killed before lawmakers take up their cause??

Susan Moffitt

Special Education: An Overlooked Factor to the Newtown Tragedy

istockphoto.com

Something has been tugging at my heart in the wake of the unfathomable tragedy in Newtown, CT.  The obvious broken systems have been laid bare.  Gun control issues must be wrestled away from special interests and mental health must be recognized as an urgent public health issue. 

But there’s another broken system in America that has yet to be fully addressed in light of Friday’s incident:  special education.

I venture to say that every parent of a special needs child knows of what I speak. 

Certainly, here in Seattle, it is common knowledge that school districts fail to provide a free and appropriate education to every child it serves.  A scathing article in the Seattle Times lays out what everyone knows all too well – teachers are without the proper training and resources to address the needs of their most vulnerable of students.

Because of this, I can certainly relate to certain elements of the Adam Lanza story. I, too, have been forced to homeschool my high school-aged son with Asperger’s because he was unable to withstand the hurly-burly of a huge, urban high school, nor thrive in the self-contained setting they offered with other children who were extremely low functioning.  Like Lanza, my son would become easily overwhelmed and take flight from what he was supposed to be doing. When a beloved classroom aide transferred to another school, no one had my son’s back anymore and the school would not be proactive about his triggers, despite my myriad exhortations. 

When I withdrew my “problem” child from school, they were nothing but relieved. I asked for homeschool resources and all they gave me was a list of free online courses. The district’s beautifully appointed Homeschool Resource Center, with its science lab, gym, library and classrooms are only for the neurotypical because I was told “they don’t have the budget to service Level 3 Special Ed students."  Now, the end result is an isolated teen who becomes more so, consigned to stare at a computer screen all day long.

I’ve been piecing together a new life for my son with my limited resources, but it’s certainly not easy. And then I read of Nancy Lanza, without a financial care in the world, holed up with her degenerating son. Maybe when you live high on a hill in an idyllic town, it’s harder to admit the reality of your life does not match the veneer — that you, in fact, aren’t hacking it as a single mother of a troubled child and that you need help. 

By all accounts, Ms. Lanza’s forays into the community were to escape her troubles, not to share them.  It reads like a major mental illness such as schizophrenia had befallen her son, and denial allowed her to believe she could handle him alone.  It remains to be seen if her gun collection was secured, but the decision to teach her son to shoot was a tragic one. If she had survived, she likely would’ve faced charges of culpability.

One fact among everything I read stuck with me — Adam Lanza’s problems first became apparent when he started elementary school and he could not find his place amongst his peers.  Maybe this is a clue as to why he revisited that scene with such deadly intent.  

To be very clear, I am in no way sympathizing with Lanza nor am I justifying the horrific acts he committed.  However, due to my own personal experiences as a single mother with a special needs child, I feel I understand much better than most as to why things unfolded the way they did.

When talking heads now espouse the need to take care of our children, special pains must be made to include all of them, including our most vulnerable.  Special education teachers need special training and programs must fit the child, rather than vice versa.  Federal pressure must be brought to bear upon school systems who chronically and flagrantly violate the civil rights of our special needs children so that the IDEA (Individuals with Disabilities Education Act of 1975) is not a lofty dream, but a working reality.

The conscience of a nation needs awakening … the dire state of our special education system affects us all.

Susan Moffitt

Adam Lanza and Autism: An Unfortunate Connection

Adam Lanza

ABC News

While still in shock and disbelief from yesterday’s deadly school shooting in Newtown, Connecticut, I was closely following a real-time feed from ABC when the following was posted to its timeline:

"Ryan Lanza, 24, brother of gunman Adam Lanza, 20, tells authorities that his younger brother is autistic, or has Asperger syndrome and a “personality disorder.” Neighbors described the younger man to ABC as “odd” and displaying characteristics associated with obsessive-compulsive disorder."

My heart sank after reading this update as I immediately knew yet again, those within the autism community, including myself, would have their work cut out for themselves in educating a misinformed public due to yet another high-profile case involving violence and Asperger’s syndrome (a high-functioning form of autism). Case-in-point, The Independent, one of Britian’s national newspapers, reported this morning that Lanza possibly suffers from “Asperger’s disease.”

In January of this year, there was the Los Angeles arson case and then in July, there was the Aurora movie theatre massacre.  Now, unfortunately, we have another instance in which autism and violence are being mentioned in the same breath.  This time, however, it is now tied to one of the most heinous acts of mass murder carried out in American history.  It’s important to note that in all three of these cases, each of the suspects were thought to have Asperger’s by the media and others.  I have yet to see any reports from an actual physician or psychologist confirming these armchair diagnoses.

While the facts of the Newtown school shooting are still emerging, it’s appearing that Lanza may have had a host of psychological and emotional issues.  However, if a high-functioning autism diagnosis is eventually confirmed, everyone needs to remember the following: Adam Lanza carried out these horrific acts in spite of his Asperger’s, not because of it.  

As investigators begin to peel away the layers from this young man’s life, I think we’ll learn that many other underlying factors contributed to his actions.  I refuse to speculate what those might be, lest I be guilty of stereotyping others (divorce victims, gamers, etc.) the same way autistics have been stereotyped thus far, both in this case and others.

Additionally, there is no evidence to suggest that those with autism or Asperger’s syndrome have a propensity to commit violent crimes.  In fact, one study actually disproves this theory altogether and demonstrates that those with autism spectrum disorders are no more likely to commit crimes than their neurotypical counterparts (Barnhill, 2007; Griffith, 10 May 2006).

Further adding to the confusion, the American Psychiatric Association is set to release its DSM-V (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) in May of next year.  This is considered the standard-bearer for classifying and diagnosing mental disorders.  In it, Asperger syndrome has been completely removed as a separate condition and merged together with other forms of autism spectrum disorders (ASDs).  This will undoubtedly further muddy the waters when it comes to the general public’s view on autism, what it is and how it affects those who have it.

My son, who has been diagnosed with high-functioning autism, currently attends a mainstream school.  My fear is that due to the incessant media reporting about Adam Lanza’s possible autism, many of his teachers and fellow students will, through no fault of their own, subconsciously look upon him with an element of distrust, speculating whether or not he too is capable of committing similar acts of violence.

The autism community is finally starting to emerge from the "Rain Man" shadow that was cast nearly 25 years ago and the last thing we need is a new stereotype that paints those with the condition as mass murderers. We have too many other battles to fight and do not need this one as well. 

It’s my hope that the media will begin to responsibly report on the Connecticut school shooting and its potential autism connection in the coming days and weeks ahead.

A good start would be to properly reference autism as a disorder and not a “disease.”

Holiday Message to Autism Parents

istockphoto.com/velora

For those of you who followed my articles in the past, you will know I’ve been out of the autism loop for a while, consumed by the affairs of my immediate family of sixteen-year-old twin sons with high functioning autism. 

Having seen them to their junior year of high school, I can tell all of you with younger children that it does get better.  Not withstanding the day in and day out rigors of dealing with autism, the myriad ways you work to bring your child to higher ground do, in fact, manifest in the expanse of time.

Your maelstrom of worries about the future settle out into finding what does and doesn’t work for you and your child. Problems that seemed insurmountable and behaviors that seemed indelible have a way of easing and even sometimes resolving.

The thing I’ve missed most about not writing is that sense of community, the encouragement and power of knowing that there are other people out there facing the same hardships that I am.

Not being in touch with the most current autism issues is a double-edged sword. I don’t miss the heartbreak of fatalities and children with autism seized by the state, but I do miss the glimmers of light in new employment programs, promising treatments, stories of kindness and inspiration.

So to all of you reading this, I want to wish you a holiday of peace and quiet happiness in which you treasure what gains your child has made and appreciate your own courage and tenacity in being on this journey called autism. You are brave indeed to ride point for your child. 

Warmest Regards, 

Susan Moffitt

MSNBC Host Suggests Colorado Shooter James Holmes Has Autism

Joe Scarborough MSNBC

As details continue to emerge about Colorado ‘Dark Knight’ murder suspect James Holmes, many media figures are beginning discuss his background, upbringing, mental health and overall state-of-mind. Unfortunately, this has invariably (and predictively) once again exposed the ignorance associated with autism.

Such is the case on yesterday’s "Morning Joe" program, when MSNBC host Joe Scarborough irresponsibly suggested that Holmes, and others like him, were autistic:

“Most of it has to do with mental health. You have these people that are somewhere, I believe, probably on the autism scale," he stated

Scarborough went on to say that he did not want to "generalize," despite having done just that. He also noted that his own son has Asperger’s Syndrome, a high functioning form of autism. However, having a family member on the autism spectrum does not excuse one from making ignorant and irresponsible statements.

First of all, there is absolutely no evidence that James Holmes has autism. Being a recluse and loner are not sole qualifiers for a diagnosis.

Scarborough’s comments were not surprising and I was actually wondering how long it would take before someone linked James Holmes to the disorder. As we have previously discussed in the past, any time a high-profile crime is committed and the suspect is described as "quiet" or "reserved," the autism label soon follows.

The fact is, there is no evidence to suggest that those with autism have a propensity to commit violent acts and studies have actually proven that those with autism spectrum disorders are no more likely to commit crimes than their neurotypical counterparts (Barnhill, 2007; Griffith, 10 May 2006). 

It’s extremely disheartening to see the level of ignorance that still exists, especially in this instance involving a parent of someone on the spectrum. Scarborough did not even get his terminology correct when referring to "the autism scale," a term hardly (if ever) used. Presumably, he intended to say "the autism spectrum."

Hopefully, Scarborough educates himself a bit further and retract his statements, which should include an apology to the autism community. 

We have a hard enough time fighting intolerance, misconceptions and discrimination, and the last thing needed is an influential media figure making armchair diagnoses about people they know nothing about.


Watch Scarorough’s comments below.  They come between the 8:00 and 9:00 mark.

Autism Conference to Shed Light on Treatment Options

AutismOne / Generation Rescue Conference

Courtesy: AutismOne / Louis Felix Photography

Next week (May 23rd – May 27th), parents, educators, physicians and individuals with autism will be converging on a Chicago-area suburb for a conference aimed at educating attendees about the disorder and its treatment options.

The 2012 AutismOne / Generation Rescue Conference will be held at The Westin Lombard Yorktown Center and feature over 130 speakers, six of which will be featured. 

The main purpose of this event (as in previous years) will be to provide education and support for families and professionals working and dealing with autism. In addition to the speakers, there will be presenters, authors and exhibitors, as well as official credits and units available for doctors, nurses, therapists and first responders (CME). Child care will be provided for families with children.

Thousands of people are expected to turn out for the five-day event, which promises to focus on biomedical treatments and other strategies that parents and their health care teams can implement.

Registration is $25 per person and covers materials and processing fees for all general session tracks and lectures.

Despite your opinion about biomedical treatment options for autism (good, bad or indifferent), this conference will be an excellent opportunity to network with many other individuals within the autism community who are sharing similar challenges. I personally will not be attending but have heard nothing but positive things from those who have attended in previous years. If you live close to the Chicago area or can swing the travel costs, you may want to consider checking it out.

For more information, including a full schedule of events and speakers, visit http://www.autismone.org/content/schedule-autismonegeneration-rescue-conference

 
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