More Info: Support Groups for Siblings of Kids With Autism

More information arrived in response to "Ideas for Finding a Sibling Support Group" posted here March 8.

Don Meyer, director of the Sibling Support Project in Seattle, wrote that his Seattle-based group provides training and technical assistance to create "Sibshops" and that there are now close to 200 sibling support groups in eight countries. "We'd be happy to talk to anyone who is interested in creating a Sibshop or similar sibling program in their community," he added.

The Sibling Support Project provides this support to families of people with disabilities besides autism. The organization also provides support via an online discussion group for both young siblings and adult siblings of people with various disabilities. You can go to www.siblingsupport.org, or write to the group at: Sibling Support Project, A Kindering Center Program, 6512 23rd Avenue NW, No. 213, Seattle, WA 98117.

Some parents who responded to the earlier article on sibling groups mentioned that their children, older brothers and sisters of kids with autism, said they weren't interested in support groups. That's great, of course, but based on the literature at this Seattle-based project, it might be wise to revisit those answers some time in the future. In the meantime, it could be helpful for all parents who have both "typically developing" children and children on the autism spectrum to check out this article: "What Siblings Would Like Parents and Service Providers to Know." This is a list that was developed by Sibling Support Project participants in an online forum, which includes adults. Among items on the list:

* "The right to one's own life" -- parents and siblings should not make assumptions about the responsibilities of typically-developing siblings "without a frank and open discussion. It's a matter of self-determination.

* "Acknowledging siblings' concerns" -- brothers and sisters "will experience a wide array of often ambivalent emotions regarding the impact of their siblings' special needs. These feelings should be both expected and acknowledged." Noted: most siblings, because they are expected to survive their parents, will have the longest-lasting relationship with the family member who has a disability.

* "Expectations for typically-developing siblings." don't set them unrealistically high. Some siblings "feel that they must somehow compensate for their siblings' special needs. Parents can help their typically-developing children by conveying clear expectations and unconditional support.

* What kind of behavior to expect from typically-developing siblings: typical. That is, they will fight and treat their siblings with disabilities badly, like other kids do. Then comes this quote from the siblings' discussion paper:

When conflict arises, the message sent to many brothers and sisters is, "Leave your sibling alone. You are bigger, you are stronger, you should know better. It is your job to compromise." Typically-developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings.

Thought-provoking stuff, no matter what your kids' ages.

Ideas For Finding A Sibling Support Group for Parents of Kids with Autism

Carol from Mercer County, New Jersey, writes:

I am trying to form a sibling support group, but I am not having much luck with finding space to hold the group or anyone who will sponsor this type of group out here. I have a 10 year old daughter who is "normal" and my son was diagnosed with Autism, ADHD and Intermittent Explosive Disorder. She feels very alone and like no one understands her and it is heart breaking. Anyone have any ideas of how to get a sibling support group up and running?

Carol posted a comment in response to an earlier article, "What A Child's Autism Means to Brothers and Sisters." She is voicing an issue familiar to families who have a "typically developing" child and another child with an autism spectrum disorder: how do you find places where your child without autism can discuss her feelings in a safe, supported environment?

I've come up with a list of suggestions below. It would be very helpful if you, Autism Bulletin readers, could add your own suggestions to this list by posting a comment on this website, or writing to me at michaelsgoldberg AT yahoo.com, so I can share your ideas (anonymously if you wish).

Some suggestions for finding information about sibling support groups where you live:

Ask other parents, wherever you meet them, including the places listed below. Ask them about the issue of sibling support groups and listen to what they say. Some may know nothing. Others may lead you to the people and places you need.

Inquire at your autistic child's school. What have parents in past years done to get sibling support? Did the school host one? Have other parents found support through agencies that provide autism services to kids on the spectrum?

Check with autism service providers, including those that provide applied behavior analysis (ABA), or places that deliver other kinds of services to kids on the spectrum, such as occupational therapy. Even if the direct service specialist doesn't know, you can ask them to ask around their office, and other families.

Look up autism advocacy and support groups. In Massachusetts, the Autism Spectrum Division of the Office of Health and Human Services provides some funding for seven regional autism support agencies, including money to run sibling support groups. (See a list of the regional support groups on page 2 of this PDF document.)

Seek information at social service agencies. A recent New York Times Magazine story highlighted the sibling support group at the Jewish Community Center in Scarsdale, N.Y., run by a social worker and "fervent 'sibshop' advocate," according to The Times. There must be other similar efforts in other states. (See more about the magazine article here.)

Look into colleges and universities that prepare teachers to work with autistic kids. The demand for autism services is rising along with the prevalence of autism spectrum disorders. (See more on that issue here.) With preparation and support, teachers and teachers-in-training can be good sibling group facilitators -- and learn a lot about autism from these siblings who live with their brothers and sisters on the spectrum. Researchers working on educational models for children on the spectrum have opened schools on campus -- including the Douglass Developmental Disabilities Center at Rutgers, the State University of New Jersey in New Brunswick. They should know something about sibling support groups, where to find them or how to start one.

Ask at advocacy groups. The Autism Society of America has a helpful article online about helping siblings understand what autism means, written by Sandra Harris, executive director at the Douglass Center at Rutgers. Find the article here. The article notes that the well-known advocacy group, New Jersey Center for Outreach and Services for the Autism Community (COSAC) has an active sibling support program. The article also mentions The Sibling Support Project, established in Seattle in 1990, as a national effort "dedicated to the interests of over six million brothers and sisters of people with special health, mental health and developmental needs." See more at www.siblingsupport.org. Notably, this group trains sibling support group facilitators. And it provides support for adult siblings of people with developmental disabilities.

Massachusetts To Consider Restrictions on Aversive Autism Therapy

Five Massachusetts lawmakers have filed a set of bills to limit the use of aversive therapy -- which includes the use of electric shock therapy, corporal punishment, aromatic ammonia and Tabasco sauce -- on children in the state. One of the three bills also increases regulation of behavior analysts who deliver services to disabled children.

The bills come in response to reports describing the use of aversive therapies at Judge Rotenberg Center in Canton, Mass., according to State Sen. Brian A. Joyce, a Milton Democrat and a leading sponsor of the three bills filed March 1. Those reports include one from New York State education officials that raised questions about the safety and health ramifications of the treatments applied to students at the school. You can see a PDF file copy of this report via The Boston Globe's website Boston.com, by clicking here.

The bills as filed would do the following:

Restrict the origination of aversive therapy programs so that only board-certified behavior analysts (BCBAs) can develop them.

Require that BCBAs oversee the implementation of such programs through direct observation and supervision.

Create a state commission to investigate the use of aversive therapy in Massachusetts and the policies and procedures governing their use.

Establish standards for aversive therapy techniques. Joyce's announcement states: "These standards will specify the scope of techniques permissible under statute and regulations, the classification system of behavioral interventions, the format and content of behavioral plans, the policies and procedures governing the development, review, approval, implementation and monitoring of aversive interventions, and the adequacy of procedural safeguards to ensure the health, safety, privacy, dignity and human rights of individuals with behavior plans in place."

Set up a state peer-review board to oversee and approve all aversive treatment interventions.

Define associate behavior analyst as someone who has passed a certification exam, and define behavior analysis as "the design, implementation and evaluation of instructional and environmental modifications to produce socially significant improvements in human behavior through skill acquisition and the reduction of problematic behavior." And define a behavior analysis program as being "based on empirical research" which includes "the direct observation and measurement of behavior as well as a functional behavioral assessment" which uses "antecedent stimuli, positive reinforcement and other consequences to produce behavioral change."

Senator Joyce said in a statement issued March 2: "We have a duty to provide these protections to our most innocent and vulnerable populations -- autistic and mentally disabled children. I am confident that the passage of this common-sense legislation will go far in ensuring that this controversial therapy is only used by qualified individuals, while adding layers of oversight to the process."

The controversial aversive therapy, which few schools offer, has made Judge Rotenberg Center a subject of intense media attention over the past year. Reading the school's own literature (available online via www.judgerc.org) and also by reading and viewing this piece from ABC News Primetime Live, "'Shocking School' Takes on Severe Autism," it's clear that the school's educators believe that severely disabled children who are prone to violent outbursts and self-injurious behavior are better off with techniques that use with electric shock and other aversive therapies than they are taking psychotropic drugs. It's also clear that the school has a community of parents and some students who defend the practices as effective -- indeed, life-altering for the better.

However, there is a lack of research studies validating the effectiveness of aversive therapies as this extensive resource page on the issue from the Wrightslaw special education advocacy website points out. (Wrightslaw shares resources on this issue in the context of the New York State report.)

Further muddying the waters on issues involving this particular school: Judge Rotenberg Center has been the subject of Massachusetts' officials scrutiny over its alleged claims that some clinicians there were psychologists who were not in fact licensed. The state and the school last October reached a consent decree, a kind of enforced settlement by which the school agreed to stop making such claims and the school agreed to pay $43,000 to settle the matter. See information about the consent decree here. The school may have to refund an estimated $800,000 in tuition fees related to this matter, the Associated Press reported March 2. See that report here, via Boston.com.

More information and background on this issue:

From Judge Rotenberg Center:

• You can read part of a research paper, "Use of Skin-Shock As A Supplementary Aversive at The Judge Rotenberg Center," by the school's executive director, Matthew Israel.
• See a description of the program here -- see especially section on "GED" or graduated electronic decelerator.

Other resources and information

New York State Board of Regents memo, March 2006, on policy question facing state on use of aversive therapies. See here.

Massachusetts State Sen. Brian Joyce website.

Readers note: I can't find the text of the three bills cited in this article on the state's Mass.gov website, but they are listed in the Senate docket, which you can see here. The bills are called:

SD01988, An Act Creating a Special Commission on Behavior Modification

SD02033, An Act Creating and Authorizing Level IV Behavioral Treatment Interventions

SD02039, An Act Relative to Behavior Analysts

Quotes in this article come from the text of the bills and from Joyce's announcement, with information provided by the offices of Sen. Joyce and Rep. John Scibak, who is a BCBA.

One last note of interest for Massachusetts readers: One of the other sponsors, Rep. Barbara L'Italien, is the mother of a child with autism.

Recent Autism News Headlines

Two big autism news stories topped coverage in the past couple of weeks. One was the consortium of researchers in Europe and North America reporting some new clues into the genetic makeup of autism spectrum disorders (read more about it here; this update includes a link to a National Public Radio discussion of the findings). The second was the United States Supreme Court hearing the Winkelman v. Parma case to decide whether parents can represent their disabled kids in federal court, brought by the Ohio parents of an autistic boy. (Read an explanation of the case here; this update includes a link to a transcript of the arguments before the court.)

Here is a rundown of other important and interesting developments:

The New Jersey Legislature is taking up nine bills related to autism services, with an emphasis on funds for research and adult services, The Asbury Park Press reports on March 3. See the newspaper's story here. See more background on what the lawmakers are thinking here.

The New Jersey Department of Education announced Feb. 20 that it was awarding $15 million in state grant money to 55 local school districts "to establish, expand or enhance public school programs and services for students diagnosed with Autism Spectrum Disorders (ASD)." See the state agency's press release here.

The Florida Autism Center of Excellence (FACE), slated to open near Tampa in August, announced Feb. 28 that it has set up an enrollment hot line for parents to get information about entering the new charter school, according to a press release you can see here. FACE received a $700,000 state education department grant last year to help set up the school, which is a project of Educational Services of America, Inc., a non-profit corporation that develops special education schools around the country. FACE won approval from the Hillsborough County, Fla., school board on Feb. 13, the press release states. More background on the project is available here.

A tragedy involving an autistic teenager in upstate New York has led a state lawmaker, to say he would urge reform in the way the state serves people with autism, the Gannett News Service reported on Feb. 23. A 13-year-old boy died after being improperly restrained in a van while two employees of the O.D. Heck Development Center, near Albany, ran errands for 90 minutes. The boy was a resident of the center. The two workers face second-degree manslaughter charges in the incident, the news agency reported. Sen. Thomas Libous, a Binghamton Republican, told the news agency he would file a bill to create an autism division within the state Office of Mental Retardation and Developmental Disabilities.

Researchers from Scotland published a study in the February issue of the journal Science describing their success in reversing the effects of Rett syndrome, a type of autism, in mice. The New York Times on Feb. 20 was one of several news outlets to highlight the study's results. A short and technical abstract of the paper is available here. Key take-away, as described by Times science writer Nicholas Wade: "This is a surprising result for a neurological disease. Biologists generally assume that if the brain does not wire itself correctly at specific stages of development, the deficit can never be corrected." Wade goes on to write: that the treatment for the Rett mice "would not work in people because it involved genetically engineering the mice before conception." Still, he adds, "the finding may encourage new approaches."

Researchers from the University of Medicine and Dentistry of New Jersey told The Star-Ledger of Newark they believe they found a diagnostic tool that uses urine and blood samples to detect a person's biological risk factors for autism. Read the Feb. 18 article online at NJ.com here. The researchers' tests zero in on how much fatty acids are in a person's blood and urine, and whether a certain gene called GSTM1, is present. Such a test, if successful, potentially would be a big deal because it could yield a method, other than observing and identifying behaviors, for an autism spectrum diagnosis.

Finally, in case you haven't seen it, there's Amanda Baggs, a very articulate video blogger and blogger who posted the video below on YouTube.com that explains, vividly, what her behavior -- that which many people would call atypical, and self-stimulatory -- means to her. This 8-minute video inspired CNN to profile her (see "Living with autism in a world made for others"), and attracted the attention of, among many others, the media consultant and blogger Andy Carvin (the writer of this piece which got my attention).

"Strange Son" Recalls Struggle of Autistic Boy Who Gains Words

The New York Times praises Portia Iverson's new book "Strange Son" as an honest, unvarnished account of the struggles she and her family have gone through to help her son, Dov, achieve the ability to communicate. You can read the review here.

For a nonverbal boy, this achievement meant that after years of silence, Dov could reveal his ability to read, could say how he felt about his younger brother, could express desires for certain toys. What makes the account resonate, says reviewer Abigail Zuger, is Iverson's refusal to sugarcoat the ongoing challenges: "Although teenage Dov can now communicate effectively and learn at his grade level, he remains saddled with profound emotional, neurological and behavioral abnormalities" -- a point made in contrast to many media messages that suggest parents should look for miraculous recoveries from autism, Zuger writes.

Iverson also describes her experience bringing from Bangalore, India to southern California Soma Mukhopadhyay and her autistic son Tito, who has learned to write poetry and communicate very well -- as long as his mother is nearby. The book recounts how Soma's style of teaching her son helped Dov.

Iverson probably could write a second book about her experience as an activist and advocate. She co-founded the advocacy group Cure Autism Now (which recently merged with Autism Speaks) and also co-founded the Autism Genetic Resource Exchange, a gene bank for researchers.

To read more about the book, visit StrangeSon.com. The Times posted an excerpt on its website which you can find here (it's a PDF file).