Conor Enjoys Saturday Morning With Dad

Conor and Dad didn't wait for Father's Day. We got out together early this morning walking on the trail, down to the river for some adventure, and some fun at the "Circle Place". There was also time for some gum ball treats.


autism

ABA and Autism: How Much Science Do The Critcs Want?

In Dr. Brown's Clinic Notes: The Science Behind ABA (Applied Behavioral Analysis) Dr. Brown briefly comments on the extensive research documenting the effectiveness of Applied Behavior Analysis, ABA, as an autism intervention. In this brief note Dr. Brown rebuts the "robotic" myth of ABA and reviews succinctly the extensive history of research into ABA's effectiveness in treating autism. He concludes his comment with the excellent question: "How much science do the critics want?"

autism

Rat Therapy for Autism?

Pam Panchak/Post-Gazette

Although ABA, Applied Behavior Analysis, is supported by five decades of research encompassing thousands of studies, confirming its effectiveness as an autism intervention, the anti-ABA activists continue to rail against ABA. Meanwhile autism continues to see the growth of totally non-evidence based therapies. Some of the stuff is dangerous although some does offer good old fashioned fun, with its therapeutic value, for autistic children. One of the more interesting developments is the use of rats, not as objects of scientific study, but as therapy for children with autism.

The Children's Therapy Center of Washington Hospital in Peters uses rats, as therapy pets, to interact with autistic children. As reported at the Pittsburgh Post-Gazette, "Rats are bringing out best in kids with autism":

"Clients giggle and grin as they interact with Moe and Larry, two tiny therapy animals who are well-behaved and affectionate and who the children call "the pets" or "the little puppies."

...

The long, skinny hairless tails are dead give-aways, at least for adults, who know what these therapy pets are -- rats.

"Oh yes, many people, including me, had reservations about working with rats," said Ms. Pollock, who is the center's facilitator for pet-assisted therapy. But Moe and Larry and their owner, Drue Tepper, 18, have won over almost everyone during weekly therapy sessions that started in March 2007.

......

Henry Cicconi, 6, of Canonsburg, has been working regularly with the rats for about 14 months now.

"When Henry started here, he didn't talk. Now he calls the animals by name," said his speech therapist, Lisa Haines."

Maybe the American Academy of Pediatrics will have to revise its "Management of Children with Autism Spectrum Disorders" to add a section on Rat Therapy. In the meantime I think we well stick with ABA for Conor. And activities like swimming and hiking. Rats? I think we will wait for the double-blind, randomized, control study results to come in.

autism

Ontario's Autism Waiting Lists and the Need for a National Autism Strategy

In Autistic Children "Rotting On The Vine" In Ontario - Why Not Consider "the New Brunswick Autism Model"? I commented on Ontario's lengthy waiting lists for autistic children seeking autism treatment. In Breaking the silence Niagara this week tells the story of Riley Methot a 3 1/2year old with severe autism who is 14th on a waiting list to receive funding for intensive behavioral intervention training. Riley's parents are paying out of pocket for his treatment and he is fortunate that they can but it is creating debt for their family. The article also features Andrew Thomas whose family moved from Ontario to Alberta in 2006 when that province lifted its age restrictions on funded ABA treatment. Andrew could barely talk when he left Ontario now, at age 11, he has gone from severe autism to functioning autism.

The Harper government hides behind constitutional jurisdiction when pressed to provide financing so that autistic children and adults can receive decent treatment and care regardless of where they live in Canada. Mr Harper, Health Minister Clement and Conservative Autism Dad Mike Lake ignore the existence of a national medicare scheme and Canada's history of cooperative federalism in refusing to help autistic people across Canada who don't enjoy the good fortune of living in a province sitting on top of a large oil supply. When families have to move to Alberta to seek treatment, or when members of national organizations who have autistic children refuse postings because of lack of funding for autism in their home province the need for a National Autism Strategy, a real National Autism Strategy, is plain and obvious.

autism

Behavior Analysts Rebut ABA Myths

Most of the criticisms of ABA as an autism intervention come from sources with little or no actual knowledge of, or experience with, ABA. Myths about suppression of an autistic child's personality, repetition and inducement of robot like behavior abound.

I have posted comments and pictures on this site of my son Conor waiting in anticipation for his ABA therapist to arrive. I have seen ABA help Conor learn skills, reduce problem behaviors and expand his ability to communicate. But as a mere parent my actual knowledge of ABA and its positive influence on my son's life is of no weight to the anti-cure, anti-treatment, anti-ABA ideologues who attack ABA despite their own lack of actual knowledge or experience with the intervention and despite the hundreds of studies and many credible professional reviews of those studies speaking to the effectiveness of ABA as an autism intervention.

In Autistic children show different behavior patterns Board Certified Behavior Analysts Dan Mruzek and Dennis Mozing rebut some of the myths and misunderstandings about ABA as an autism intervention. There is nothing particularly new about what Mruzek and Mozing have to say. What they have to offer is actual knowledge of, and experience with, autism as an intervention.

Unlke some anti-ABA ideologues who accuse behaviourists of misbehaving and propogate unfounded, negative myths about ABA Mruzek and Mozing have actual experience with ABA. They have more than empty, heated rhetoric to offer - they have, as Board Certified Behavior Analysts talked the talk and walked the walk. Unlike most anti-ABA critics they actually know what they are talking about. They offer their comments on an article which perpetuated some of the ABA misconceptions:

Unfortunately, the essay perpetuated some all-too-common misconceptions about applied behavior analysis, particularly that it is "rooted in repetition" and focuses mainly on making "children with autism ... indistinguishable from their peers." In fact, the concept is a very flexible approach, with teaching methods and goals carefully tailored to the needs of each child.

And they speak to ABA's effectiveness as a means of helping autistic children:

The first applied behavior analysis study specifically targeting autism was published in 1964. Since then, it has become the most-studied intervention for children with autism — the only one recommended by the New York State Department of Health. It includes a wide array of teaching methods grounded in scientifically derived principles of learning, especially those related to the powerful effect of positive reinforcement on behavior change.

Applied behavior analysis can help people with autism develop new skills (in academics, play, communication, social interaction) and support those who engage in challenging behaviors (severe tantrums, refusing food, injuring themselves).

Intensive, early intervention for young children with autism can be especially effective, although outcomes vary among individuals. A study under way at UR is investigating factors possibly implicated in these variable outcomes.

autism

Bruno Hache, A Person With Asperger's, Tells His Story

Bruno Hache

On Thursday June 5 I was one of the keynote speakers at the Jonathon Howard Run the Dream event in Fredericton, New Brunswick. Mr. Howard is doing a remarkable thing; taking most of a year of his life to run across Canada for autism. The musical entertainment was excellent including Cathy Hutch and BJ McKelvie performing "I'm In Here".

The highlight of the night for me though was a talk given by Bruno Hache, (photo above), a young man with Asperger's, and an outstanding, positive, attitude, who is very good at public speaking, has a great sense of humor and was very informative and entertaining. I asked Bruno if he would consider sending me some information about himself to post on this blog site and he has kindly obliged.

Bruno in his own words:

*K-8 years:

* I vaguely remember in my K-4 years being diagnosed as extremely gifted, and having absolutely no motor skills. PE and music class were both nightmares. Academically, I would excel in English, French and the Sciences, and fail miserably at Math and anything numbers-related. I had very few friends, spent most of my recess alone or with the "geek" crowd talking video games, the space program, or anything that wasn't typical of an 8 year old.

* High School:

* This period of life, for any adolescent is supposed to be a period of intense growth and development. I didn't. 9th grade was a living nightmare. I was neglected as a "geek", a "nerd" and constantly teased and bullied by my classmates. I entered depression. Many visits to the school psychologist, guidance counselors, Mental Health workers led to depression. Further studies by a psychiatrist led to "Asperger Syndrome". The next two years of high school, for me was trying to find out what exactly Asperger's is, and trying to learn what I could do, because my psychiatrist, at the time, was not exactly knowledgeable of the fact. The school psychologist had absolutely NO idea how to pursue with an adolescent with AS.

I remember spending nights "Googling" for strategies on coping with Asperger's, and also trying to explain in layman's terms to my parents what being an Aspie is.

*College Years

*I was forced, in 2001, to quit High School due to depressive moments. The next few weeks after, I decided to pursue my talents. I managed to take a Computer Technician course at a private college (Academy of Learning) and eventually graduated from this program in December, 2001. I realized that having no High School diploma would get me nowhere. I subsequently pursued my GED, obtained it in May of 2002. I was 17 years old at the time, and trying to enter the adult working world was a bit hard. I got hired by Canadian Tire, in Bathurst, as an Auto Parts Clerk (my second passion) and then worked there for a few years.

Deep in my heart, since I left high school, I have always wanted to work with special needs children. I have known that there was very little support given in my territory at the time (Bathurst, NB). I took the leap in the spring of 2003 to apply at the University of New Brunswick to enter their Bachelor of Arts/ Elementary Education program. I was accepted! Fall came, and I had given the opportunity to meet an amazing lady called Patricia Kirby, who works at the Student Accessibility Center. She had just completed studies on Asperger's Syndrome. She helped me greatly discover who I am, and what I want to do through my first two years. She managed to explain to my parents -and also clarify to them what AS is. I still can't thank her enough to this day!

*Yesterday, Today and The Future

*I was forced, due to financial and health reasons to leave UNB and pursue full-time employment. Fast-forward to the spring of 2007. I was still employed in the retail sector, and officially ready to move forward. I enrolled at the CompuCollege School of Business in Moncton. I have recently graduated with an 85% and am working full-time at Canadian Tire as a retail floor manager! I have learned, with support from Ms. Kirby, and various sources, how to cope with AS, and getting to know my strengths and weaknesses. I've learned that if you exploit your talents, you will succeed.

I am currently an autism advocate, a "big brother" to two Asperger pre-teens in the Bathurst, NB area. I am helping them transition from middle school to high school, and doing my best to improve their social life. I am also a volunteer with Autism Consultants NB as an Asperger Spokesperson.

Much of my spare time is spent on autism advocacy, research, and volunteering to the cause. I do, however, spend quality time with friends, family and my own social life.

The future: Given my past experience with AS in the school systems, and with my skills - how I've coped with it.. I am determined to pursue the Autism Intervention Worker Program at UNB while working full-time, and eventually open a private practice, where I will have the opportunity to travel to remote areas in New Brunswick to help with autistic children. Many parents cannot afford to drive to major centers and this is where I will come handy as I plan to travel to their locale.

Without support from my family, friends and co-workers, I would not be where I currently am today. I will forever be thankful for this. To anyone with a child who has Asperger Syndrome: Work on his or her talents first and foremost. Develop their social skills based on them. That's how I got where I am now.

autism

Invisible Autistics: The Severely Autistic

Parents of children with Autistic Disorder have often encountered uncomprehending stares when their children suffer public meltdowns. Service providers routinely state that mere physical inclusion in a classroom will inevitably help all autistic children and then blame the children when they over overwhelmed. These responses arise from ignorance. Parents strive to educate and inform but they must overcome persistent ignorance of the realities of autistic disorder.

The ignorance is perpetuated by a mass media - read CNN, NY Magazine and now ABC News, addicted to feel good, fluffy tales of autism focused on a few with exceptional abilities and on the barely autistic persons with Aspergers who lead the outrageously misnamed Autism Rights movement; a movement which in fact suppresses the rights of those with Autistic Disorder and severe deficits.

There are some exceptions to the feel good media focus particularly here in Canada. The Vancouver Sun took a realistic look at autism in its Face of Autism series. Recently CBC New Brunswick did a feature on a severely autistic teen living with his parents who have to use restraints to protect family members from acts of aggression. In neighboring Maine, the Bangor Daily News recently featured the story of a Maine family struggling to care for their autistic adult daughter at home in Crisis in Caring.

Generally though attempts to get the truth out about severe autism realities are ignored by the mainstream media. I was in contact with one of the major news networks recently and suggested that they do a feature on the lives of autistic persons living in institutional care. I am not holding my breath on that one. The leaders of the so called Autism Rights movement actively work to suppress the truth being told about persons with severe autism deficits. They organize petitions to harass institutions which use negative images of autism as Dr. Koplewicz and the "Ransom Notes" campaign found out. The families who courageously told the truth about the challenges faced by their autistic children in the Autism Every Day video have been vilified by the leaders of the alleged Autism Rights movement.

Here is the truth about children with severe autism disorders and deficits:

1) Their parents and families love them deeply; that is why they seek to help them overcome their deficits and challenges;
2) Many ARE doomed to lives of dependency and residential or institutional care;
3) Some injure themselves, family members, educators and care givers very seriously through such actions as biting and head banging;
4) Some are so sensitive and averse to specific textures and tastes that they virtually starve themselves;
5) Some have serious intellectual, communication and behavioral deficits;
6) Some lack understanding of the real world and its many danges such as automobile traffic or drowning.

These are only some of the harsh realities faced by severely autistic persons and their families. It is because of these realities that families, persons who actually care about THEM, try to find treatments and hopefully some day a cure, to help them live a fuller, longer, more independent life. No one is trying to cure the high functioning persons with Aspergers who lead the "Autism" Rights Movement. Their anti-cure rallying cry actually has little or nothing to do with them. Their anti-cure rallying cry is really an attempt to suppress the rights of the severely autistic about whom the ARM leaders care very little.

It is, and always will be, parents of the severely autistic who love them, care for them, sacrifice for them, and try to help them who seek to cure their own children and to make the world, including such "news" organisations as CNN, NY Magazine and ABC News aware of their existence.

They are the invisible autistics. They are our children, our brothers and sisters. And we love them as they are. But we also try to make their lives better through accommodation, yes. Through education, yes. Through treatment, yes. And if cures become available, through cures.
And we will undertake these challenges even though our severely autistic family members remain invisible to the world; even though their rights, even knowledge of their existence is suppressed by the leaders of a movement which falsely pretends to speak on their behalf.

autism

Kristina Chew's False Autism Dichotomy

"But Kristina Chew also said she wouldn't change her severely autistic son Charlie if she could.

"We really try and understand him on his own terms," she said.

That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.

"Acceptance, to me, is the beginning of hope," Chew said. "I look at my son, even on the days, the most terrible, terrible days. I still knew that I love my son. That he was with us, and that he would be with us, and that the hope was really in him.""

ABC News

The above quote is from the ABC news feature on the "Autism" Rights Movement led, not by a person with Autistic Disorder, but by a person with Aspergers. This intelligent, articulate, media savvy individual presumes to speak on behalf of persons with Autistic Disorder, and persons with much more severe life challenges and say that they, like him, don't want a cure. New York Magazine and now ABC News has jumped on this misleading rights movement. And of course, there too is Neurodiversity mom Kristina Chew with her usual false autism dichotomy as set out above. Acceptance - as Ms Chew articulates it - is surrender.

If you truly love your autistic child you will stop trying to cure him or her and surrender. And, oh, don't worry about that self injury thingy, that head banging, hand biting, self starvation, running in traffic or just wandering away stuff. That is all part of acceptance. You either accept and celebrate your child's autism or you do not truly love him or her. That is the false dichotomy promoted by Ms Chew.

Here is news for Ms. Chew. Parents seeking to treat and cure their autistic children do love them. That is why THEY seek treatment and cure for their children. Even if you do not.

autism

Barely Autistic Spokespersons of the Alleged Autism Rights Movement Misrepresent Their Constituency

How many of the spokespersons for the alleged Autism Rights Movement are actually autistic? At best it can be said that, to the extent that they share symptoms with persons with severe Autistic Disorder, they are barely autistic, and not representative of those with severe Autistic Disorder and they have no right to speak on their behalf.

There are several disorders on the spectrum of Pervasive Developmental Disorders. As a group these are casually referred to as the Autism Spectrum of Disorders. But they are in fact the PDD spectrum of disorders. The five distinct disorders on the PDD Spectrum are described in the addendum following this comment.

There are similarities, and differences, between the five disorders. Many of the leaders of the so called Autism Rights Movement actually have diagnoses of Aspergers and tend to have far greater abilities to function in the real world then some people with Autistic Disorder. While some of the alleged ARM actually go to college have friends and even intimate relationships, appear in Magazines and on television, and claim that "we autistics" do not want to be cured, NONE of the persons with severe Autistic Disorder are represented by these elites.

The high functioning leaders of the ARM have little in common with the autistic children who wander away from their homes, sometimes to be lost forever in deadly traffic or drowned in neighborhood pools. The high functioning leaders of the ARM have little in common with the adults with severe Autistic Disorder who live in the care of others in group homes or institutional settings. They mispresent the nature of their movement when they pretend to speak on behalf of persons with severe Autistic Disorder.

The Five Types of PDD

(1) Autistic Disorder. Autistic Disorder, sometimes referred to as early infantile autism or childhood autism, is four times more common in boys than in girls. Children with Autistic Disorder have a moderate to severe range of communication, socialization, and behavior problems. Many children with autism also have mental retardation. The DSM-IV criteria by which Autistic Disorder is diagnosed are presented below.

Diagnostic Criteria for Autistic Disorder

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder. (APA, 1994, pp. 70-71)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(2) Rett's Disorder. Rett's Disorder, also known as Rett Syndrome, is diagnosed primarily in females. In children with Rett's Disorder, development proceeds in an apparently normal fashion over the first 6 to 18 months at which point parents notice a change in their child's behavior and some regression or loss of abilities, especially in gross motor skills such as walking and moving. This is followed by an obvious loss in abilities such as speech, reasoning, and hand use. The repetition of certain meaningless gestures or movements is an important clue to diagnosing Rett's Disorder; these gestures typically consist of constant hand-wringing or hand-washing (Moeschler, Gibbs, & Graham 1990). The diagnostic criteria for Rett's Disorder as set forth in the DSM-IV appear below.

Diagnostic Criteria for Rett's Disorder

A. All of the following:

(1) apparently normal prenatal and perinatal development
(2) apparently normal psychomotor development through the first 5 months after birth
(3) normal head circumference at birth

B. Onset of all of the following after the period of normal development

(1) deceleration of head growth between ages 5 and 48 months
(2) loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
(3) loss of social engagement early in the course (although often social interaction develops later)
(4) appearance of poorly coordinated gait or trunk movements
(5) severely impaired expressive and receptive language development with severe psychomotor retardation. (APA, 1994, pp. 72-73)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(3) Childhood Disintegrative Disorder. Childhood Disintegrative Disorder, an extremely rare disorder, is a clearly apparent regression in multiple areas of functioning (such as the ability to move, bladder and bowel control, and social and language skills) following a period of at least 2 years of apparently normal development. By definition, Childhood Disintegrative Disorder can only be diagnosed if the symptoms are preceded by at least 2 years of normal development and the onset of decline is prior to age 10 (American Psychiatric Association, 1994). DSM-IV criteria are presented below.

Diagnostic Criteria for Childhood Disintegrative Disorder

A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.

B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:

(1) expressive or receptive language
(2) social skills or adaptive behavior
(3) bowel or bladder control
(4) play
(5) motor skills

C. Abnormalities of functioning in at least two of the following areas:

(1) qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
(2) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms

D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia. (APA, 1994, pp. 74-75)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(4) Asperger's Disorder. Asperger's Disorder, also referred to as Asperger's or Asperger's Syndrome, is a developmental disorder characterized by a lack of social skills; difficulty with social relationships; poor coordination and poor concentration; and a restricted range of interests, but normal intelligence and adequate language skills in the areas of vocabulary and grammar. Asperger's Disorder appears to have a somewhat later onset than Autistic Disorder, or at least is recognized later. An individual with Asperger's Disorder does not possess a significant delay in language development; however, he or she may have difficulty understanding the subtleties used in conversation, such as irony and humor. Also, while many individuals with autism have mental retardation, a person with Asperger's possesses an average to above average intelligence (Autism Society of America, 1995). Asperger's is sometimes incorrectly referred to as "high-functioning autism." The diagnostic criteria for Asperger's Disorder as set forth in the DSM-IV are presented below.

Diagnostic Criteria for Asperger's Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(4) lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single word used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder, or Schizophrenia. (APA, 1994, p. 77)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(5) Pervasive Developmental Disorder Not Otherwise Specified. Children with PDDNOS either (a) do not fully meet the criteria of symptoms clinicians use to diagnose any of the four specific types of PDD above, and/or (b) do not have the degree of impairment described in any of the above four PDD specific types.

According to the DSM-IV, this category should be used "when there is a severe and pervasive impairment in the development of social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder" (American Psychiatric Association, 1994, pp. 77-78).

autism

Help For Your Autistic Child? Consult Credible Autism Authorities

If you are seeking help for your autistic child you should certainly consult your local professionals. If you do so you may want to make sure they are up to date and aware of some of the leading reviews of the effectiveness of various autism interventions. One thing you absolutely should NOT do is listen to anti-ABA activists. Their opposition to ABA is usually based on ideology, emotion and their own personal rejection of autism as a disorder or disability. Some credible agencies which have reviewed the scientific basis supporting the effectiveness of which hundreds of studies over several decades supporting the effectiveness of ABA as an effective autism intervention include:

American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders 2007

MADSEC (Maine) Autism Task Force Report 2000 (rev ed)

US Surgeon General 1999

NY State Dept of Health 2005 (rev ed)

This is what the AAP and MADSEC reports stated:

American Academy of Pediatrics (2007):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

MADSEC Autism Task Force Report (2000):

Over the past 30 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:

• populations (children and adults with mental illness, developmental disabilities and
learning disorders)
• interventionists (parents, teachers and staff)
• settings (schools, homes, institutions, group homes, hospitals and business offices), and
• behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury,
oppositional and stereotyped behaviors)

…

The effectiveness of ABA-based interventions with persons with autism is well documented, with current research replicating already-proven methods and further developing the field.

Documentation of the efficacy of ABA-based interventions with persons with autism emerged in the 1960s, with comprehensive evaluations beginning in the early 1970s. Hingtgen & Bryson (1972) reviewed over 400 research articles pertinent to the field of autism that were published between 1964 and 1970. They concluded that behaviorally-based interventions demonstrated the most consistent results. In a follow-up study, DeMeyer, Hingtgen & Jackson (1981) reviewed over 1,100 additional studies that appeared in the 1970s. They examined studies that included behaviorally-based interventions as well as interventions based upon a wide range of theoretical foundations. Following a comprehensive review of these studies, DeMeyer, Hingtgen & Jackson (1982) concluded “. . .the overwhelming evidence strongly suggest that the treatment of choice for maximal expansion of the autistic child’s behavioral repertoire is a systematic behavioral education program, involving as many child contact hours as possible, and using therapists (including parents) who have been trained in the behavioral techniques” (p.435).
Support of the consistent effectiveness and broad-based application of ABA methods with persons with autism is found in hundreds of additional published reports. [highlighting added HL Doherty]

Baglio, Benavidiz, Compton, et al (1996) reviewed 251 studies from 1980 to 1995 that reported on the efficacy of behaviorally-based interventions with persons with autism. Baglio, et al (1996) concluded that since 1980, research on behavioral treatment of autistic children has become increasingly sophisticated and encompassing, and that interventions based upon ABA have consistentlyresulted in positive behavioral outcomes. In their review, categories of target behaviors included aberrant behaviors (ie self injury, aggression), language (ie receptive and expressive skills, augmentative communication), daily living skills (self-care, domestic skills), community living skills (vocational, public transportation and shopping skills), academics (reading, math, spelling, written language), and social skills (reciprocal social interactions, age-appropriate social skills).

In 1987, Lovaas published his report of research conducted with 38 autistic children using methods of applied behavior analysis 40 hours per week. Treatment occurred in the home and school setting. After the first two years, some of the children in the treatment group were able to enter kindergarten with assistance of only 10 hours of discrete trial training per week, and required only minimal assistance while completing first grade. Others, those who did not progress to independent school functioning early in treatment, continued in 40 hours per week of treatment for up to 6 years. All of the children in the study were re-evaluated between the ages of six and seven by independent evaluators who were blind as to whether the child had been in the treatment or control groups. There were several significant findings:

1) In the treatment group, 47% passed “normal” first grade and scored average or above on IQ
tests. Of the control groups, only one child had a normal first grade placement and average
IQ.

2) Eight of the remaining children in the treatment group were successful in a language
disordered classroom and scored a mean IQ of 70 (range = 56-95). Of the control groups,
18 students were in a language disordered class (mean IQ = 70).

3) Two students in the treatment group were in a class for autistic or retarded children and
scored in the profound MR range. By comparison, 21 of the control students were in
autistic/MR classes, with a mean IQ of 40.

4) In contrast to the treatment group which showed significant gains in tested IQ, the control
groups’ mean IQ did not improve. The mean post-treatment IQ was 83.3 for the treatment
group, while only 53.3 for the control groups.

In 1993, McEachin, et al investigated the nine students who achieved the best
outcomes in the 1987 Lovaas study. After a thorough evaluation of adaptive functioning, IQ and personality conducted by professionals blind as to the child’s treatment status, evaluators could not distinguish treatment subjects from those who were not. Subsequent to the work of Lovaas and his associates, a number of investigators have
addressed outcomes from intensive intervention programs for children with autism. For example, the May Institute reported outcomes on 14 children with autism who received 15 - 20 hours of discrete trial training (Anderson, et al, 1987). While results were not as striking as those reported by Lovaas, significant gains were reported which exceeded those obtained in more traditional treatment paradigms. Similarly, Sheinkopf and Siegel (1998) have recently reported on interventions based upon discrete trial training which resulted in significant gains in the treated children’s’ IQ, as well as a reduction in the symptoms of autism. It should be noted that subjects in the May and Sheinkopf and Siegel studies were given a far less intense program than those of the Lovaas study, which may have implications regarding the impact of intensity on the effectiveness of treatment.

...

Conclusions
There is a wealth of validated and peer-reviewed studies supporting the efficacy of ABA
methods to improve and sustain socially significant behaviors in every domain, in individuals
with autism. Importantly, results reported include “meaningful” outcomes such as increased
social skills, communication skills academic performance, and overall cognitive functioning.
These reflect clinically-significant quality of life improvements. While studies varied as to the
magnitude of gains, all have demonstrated long term retention of gains made.

Other major contributions of ABA to the education and treatment of individuals with autism
include:

• a large number of empirically-based systematic instruction methods that lead to the
acquisition of skills, and to the decrease/elimination of aberrant behaviors;
• a technology for systematically evaluating the efficacy of interventions intended to affect
individual learning and behavior; and
• substantial cost/benefit.

Over 30 years of rigorous research and peer review of applied behavior analysis’ effectiveness for individuals with autism demonstrate ABA has been objectively substantiated as effective based upon the scope and quality of science. [highlighting added - HLD]

autism

Severe Autism Reality - Adult Autism Care Crisis for Maine Family

Caring for severely autistic persons is not easy and it does not get any easier as autistic children become adults and parents and other family members also age. In A Crisis in Caring Meg Haskell of the Bangor Daily News has an excellent report on Jennie Segerson, a 29 year old severely autistic Maine woman who has been living with her mother and family members who obviously love her very much. Jennie's mother is now 69, blind as a result of diabetes, and the private care agency workers who come to her home are poorly trained and motivated. Jennie herself can become aggressive and violent to herself and others. Her mother now faces the likelihood of permanent separation from Jennie because she can no longer care for her safely.

As the father of a severely autistic boy in the neighboring Canadian province of New Brunswick this story really hit me. Ms Haskell pulls no punches telling the truth about Jennie's severe autism challenges. It is not the kind of information you are likely to find reading about autism on Neurodiversity blog sites such as those of the so called "Autism" Hub bloggers usually written by, or about, high functioning autistics or persons with Aspergers. But while Ms Haskell describes Jennie's severe autism realities candidly she also conveys the deep love Jennie's mother has for her and the anguish she feels at the prospect of losing her daughter.

On a lighter note I had to laugh when reading about Jennie's excitement as she waited for her brother in law to arrive in his silver truck to take Jennie to her day care program:

""Silver truck!" she exclaimed, her shy smile breaking into a wide grin of delight and anticipation. "Silver truck!" She clutched her battered doll, Silver, in glee, waiting for the sound of the pickup pulling into the driveway."

I thought of Conor as I read that paragraph and his requests for "silver car" as a way of summoning Dad home from work ... in my silver Camry.

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Conor Goes Exploring At The River

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Conor's Water Balloon Therapy

Conor seemed a bit worn out driving home from school yesterday, at the end of the week, until he got home and found some water balloons!

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Fredericton in June

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