Disclaimer: What follows are notes from the sessions I attended at the July 1998 Autism Society of America�s National Conference. These are mainly points I thought were important enough to write down, augmented by some wording from the handouts and the published Proceedings. These are in quotation marks. I believe more than 90 % of what follows can be trusted to be straight reporting of the presentations mentioned. However, if any of the information is misleading or inaccurate, I apologize up front. - Jeff Romanczuk
Life Time Planning Issues for Individuals with Autism and Their Families
William Dussault
In the opening day�s keynote address, Dussault (a lawyer practicing in Seattle, Washington) relayed the importance of life planning, especially now that individuals with disabilities are more routinely out-living their parents. He indicated that education in preparation for independent living has come a good way since 1970, when no state was required to education individuals with autism. Although by the 1980s, access to education was granted in all 50 states, Dussault pointed out that the battle is not only far from over, but also far from won.
Social change is a slow process that can take a century to be realized. While it is important to remember that we are still in the early stages of this process, we need to plan for the �meaningful survival� of those now living with autism. Easier said than done when the systems in place to help us are rife with funding shortages and other failures. However, Dussault insisted that the value of being independent makes it crucial to reduce our reliance on government support. He acknowledged that unless you are independently wealthy, the costs involve make truly independently raising a child with a disability forbidding.
Dussault then settled into an explanation of the stages of an individual plan, which are:
1. Medical survival through insurance and insurance supplements
2. Early intervention/education
3. Helping to �raise� your school district
He pointed out that although autism accounts for only 1 % of the special education population, it accounts for 40 % of the special education litigation and 80 % of school placement problems. Most of this can be attributed to the poor understanding of what autism is and the range of the Autistic Spectrum Disorder. However, Dussault�s point is that in the early years, survival skills should be primary, with the transition to independent living occurring during the teen and college-aged years. He placed heavy emphasis on K-12 education as �the neck of life�s hourglass.� That is, students come into the educational setting from everywhere, then go out into the world following the school years.
As a lawyer, Dussault emphasized the importance of the records kept during the school years as the basis for adult planning. He decried how poorly special education records are kept; not so much that what is in them is poorly done, but that so little is documented. He advocated for recording with the end result in mind. When an 18 (or so) year old exits the school system, that should not be the moment everyone involved says, �Okay. What now?�
Dussault finished with a few suggestions for the adult years:
1. Applying as soon as eligible for Medicaid waivers, which waive the requirement to use federal government money in institutional settings
2. Apply to your state�s Department of Vocational Rehabilitation
3. Decide when and whether keeping your adult child at home is more negative than positive
4 If necessary, obtain legal responsibility for the adult you are caring for, since a parent�s legal responsibility ends when the child reaches 18 years old
5. Set up a special needs trust to plan for future resources
6. Advocate for your child, the �parents� main role�
Autism Research Foundations: Panel Discussion
Bernard Rimland, Portia Iversen, Karen London, Charles Cartwright, John Maltby
With Maltby as moderator, each of those listed was given about 12 minutes to summarize their organization�s connection to autism research.
Rimland went first, explaining that he founded the Autism Research Institute (ARI) in 1967 on the Behavior Modification model. (He is an experimental psychologist by training.) ARI has sent out and �scored� nearly 29,000 diagnostic checklists that help quantify and range the level of delay in the areas of speech and behavior. ARI has always done this work, as well as publishing summaries and analyses of autism treatments and research, as �an international clearinghouse for autism research.� What ARI has taken on more recently is a �Defeat Autism Now!� campaign to promote a consensus among the autism community about etiologies and treatments that will lead to a cure.
(Web site: http://www.autism.com/ari/)
Iversen stated that she and her husband began Cure Autism Now (CAN) in 1995 mainly to bridge the gap between discovery and suffering. She cited a 90 % statistic for identical twins both having autism as strong evidence of a genetic component. CAN started the Autism Genetic Research Exchange (AGRE) so that the various genetic researchers could share the same subject samples. One other gap that CAN fills is pilot study funding of small projects to see if these have merit enough to earn more substantial backing from bigger research funders. As such, CAN has become the largest non-Federal funder of autism research in the U.S.
(Web site: http://www.canfoundation.org/)
Karen London of the National Alliance for Autism Research (NAAR, founded in 1994) also stated that �seed money� for initial research is the primary benefit of her organization. Many recipients have gone on to earn National Institutes of Health (NIH) funds for follow-on studies. NAAR has raised over $1 million last fiscal year and hopes to reach $10-12 million each year. London inserted one stand-alone point into her talk that grabbed me: she was talking about how she had to convince her husband to concentrate their charitable donations to autism, not other causes. Maybe she said this or maybe I�m paraphrasing, but it makes sense that if your life is autism, then autism should be your life.
(Web site: http://www.naar.org/)
Charles Cartwright spoke next for the Seaver Center for Autism Research and Treatment (founded in 1993), one of the recipients of seed money from CAN. Cartwright is a Child Psychologist, but his recent work for the Seaver Center is tracking genetic autism links. (Seaver is in with AGRE and involved in other collaborative research.) He mentioned preliminary findings linking autism with immune markers and obsessive compulsive disorder and also a link between oxytocin levels and social connectedness. The Seaver Center�s goal is to identify the biological causes of autism and related disorders and develop effective treatments.
(Web site: http://www.autism-society.org/foundation/seaver.html)
Kathy Roberts spoke for the Autism Research Foundation (TARF), mainly Dr. Margaret Bauman�s neouropathology, brain tissue studies. With 11 brains analyzed to date, the main finding is that although certain brain regions of autistic subjects are different from the �normal� sizes expected, there is no visible damage to the brains. Roberts also mentioned that TARF has formed a Tissue Resource Committee to develop a long-term best-use plan for this limited resource.
(Web site: http://www.ladders.org/)
Maltby finished by briefly covering ASA�s role in research, namely to quantify the return on investment and weigh this against the cost of not supporting autism�s biomedical research. The ASA Foundation was established for this purpose, its two current programs being the Autism Tissue Project (in conjunction with NAAR) and the Autism Research Registry.
(Web site: http://www.autism-society.org/foundation/)
General Session on Autism Research
Part I: An Update from the NIH
Marie Bristol-Power
Bristol-Power�s general session (for all nearly 1,400 in attendance) was an update of National Institutes of Health (NIH) research. She noted that NIH now has an Autism Coordinating Committee to crosslink autism research across the Institutes concerned with it. Animal models have been developed. Bristol-Power described a �disheveled mouse� study that is an attempt to zero in on what in the brain makes us social or asocial. She also relayed information about the neuroplasticity of the brain and how animal models are good for researching and tracking possible environmental etiologies of autism.
(Web site: http://www.nih.gov/)
Part II: Biological and Behavioral Heterogeneity in Autism: Role of Pleiotropy and Epigenesis
Eric Courchesne
Courchesne�s talk concerned defining and explaining the role of the 2 words given in the title. However, he did start with a general background on autism�s genetic research. He mentioned that the first high serotonin levels in the brains of those with autism were found in 1961. At least 25 % of those with autism have high serotonin levels. He also pointed out that previous research has indicated the cerebellum is the center of language learning. Since many individuals with autism have language delays, a connection is implied.
However, 100,000 brain cell can be traced to etiologies of various disabilities. Even with disorders caused by a single gene, the manifestation in the brain is complex. Courchesne noted that genes 4, 7, 10, 16, 19, and 22 have been linked to autistic causation, not to mention the duplication at gene 15 [15q11(13)].
Pleiotropy (how efficiently the brain works) and its epigenesis (plasticity), then, serve to connect the broad range of the brain�s unique development in autism. Courchesne stated that epigenesis involves the environment; information the brain receives shapes future interactions and outcomes, and the brain�s growth as well. That is, neural construction depends on input. This would not only help explain the range of behaviors in the autism spectrum, but also resolve why similar outcomes could result from different developmental beginnings.
A Biobehavioral Approach to the Assessment and Treatment of Problematic Behavior
David Holmes, Anne Holmes, Jerri Kroll
David and Anne Holmes (no relation) are the President/Executive Director and Director of outreach services for the Eden Family of Services in Princeton, New Jersey. Jeri Kroll is the Coordinator of Strategies for Therapy, Assessment, Respite, and Treatment (START) Clinical Services based in Massachusetts. There talk centered on the Eden Decision Model for when and how to intervene in a behavior and how to quantify its problematic level. START decision trees outlining differential reinforcement and behavior maintenance were also covered. Simply put, the need to test one by one the medications or situations resulting in certain aggressive, injurious, or disruptive behaviors is the key to minimizing or eliminating these behaviors.
(Website: http://members.aol.com/EdenSvcs/)
Genetic Studies of Autism
Edwin Cook
Cook�s talk was based on his in-press article, �Mental Retardation and Developmental Disability Research Reviews.� In it he points out that the risk of autism�s recurrence with later siblings is 4.5 % to 8.9 %, which is 45 to 178 times greater than the (.05 % to 0.1 %) risk of autism in the general population. He noted that although 3 or 4 times as many males as females are diagnosed with autism, studies to date that concentrate on the X chromosome have not borne out a connection between it and autism. However, that autism is �strongly genetic� has been well replicated in the research. However, one of the problems with gene research on neurological disorders is that the neuroanatomical differences are subtle in autism and developmental differences are immature even in adults with autism.
Cook posits that, assuming there are 5 suspect genes, all of which have to be present to cause autism, perhaps the dominance of 1 causes �classic� autism, another Asperger�s Syndrome, etc.
He inserted a narrowly related point toward the end of his talk. Complex disorders should not increase health care costs for two reasons: the risks are widespread and the possibility is so rare that any costs are a �drop in the health care bucket.� Autism is an international disorder occurring among every race in every country, but it occurs in only 1 in 1,000 to 2,500 births.
(Web site: http://www.nemc.org/psych/autism/)
Medication and Autism
Joshua Feder, Susan Schmidt-Lackner
Feder and Schmidt-Lackner spoke in turns, mainly, but also added comments to each other�s talks based on their own experience with certain drugs. Feder did make the point early that medication is prescribed to treat the symptoms of autism to �make it more manageable and allow better learning.� There is no cure and no remission with autism.
While most of their presentation zeroed in on specific drugs, they also addressed the problems associated with polypharmacy (many prescriptions being used simultaneously, including vitamins and herbs).
Feder indicated he is currently have good results with low doses of buspirone (Buspar), an anti-anxiety drug usually prescribed to adults, better than with fluoxetine (Prozac) and other Serotonin Specific Reuptake Inhibitors. Schmidt-Lackner has had unremarkable results with limited use of Buspar.
Both warned of the necessity to monitor EKGs and blood tests with the use of tricyclic antidepressants such as imipramine, anafranil, and clonidine. The major side effect of antiphychotic medications such as chlorpromazine (Thorazine), thioridazine (Mellaril), and haloperidol (Haldol) is rapid weight gain.
Mood stabilizers (like lithium) and antiseizure drugs like carbemazapine (Tegretol) and valproic acid (Depakote) have been prescribed mainly for people with bipolar disorders, but are also used for Pervasive Developmental Disorder symptoms. While these reduce irritability and aggression, they require blood level monitoring and Depakote has been linked to liver failure in children taking multiple antiseizure medications.
Melatonin, DHEA, St John�s Wort, Pycnogenol, and gingko biloba were among the herbal treatments mentioned,. While melatonin has been reported useful as a sleep aid, recent studies question its value while claiming aggravated sleeping problems for those trying to stop using the hormone. Similarly, the antidepressant effects of DHEA are inconclusive. St. John�s Wart may be carcinogenic and the antioxidant utility of Pycnogenol is unsupported in the medical literature to date. The only nontraditional medication Feder had good words for was gingko biloba, which improves attention spans and slows memory loss with few side effects.
Autism and Genetics
Part I: Results of the Stanford Autism Genetics Project
Neil Risch, Donna Spiker
Starting with the cell as the largest unit of study, the progression smaller and smaller goes: chromosome, chromosome fragment, then gene. There are 300 million base pairs in the human genome. That the ratio of monozygotic to dizygotic autism in twin studies is 75 to 3 indicates that more than 1 or 2 genes are involved in autism. Spiker stated that lots of genes contribute different percentages to the phenotype of autism.
Part II: Collaborate Autism Project Findings to Date
Joseph Piven
By �collaborative� Piven means that Iowa, Tufts, Johns Hopkins, and Vanderbilt are involved in the project he reported on. So far genes 6q, 7q, 15q, and 17 are implicated in autism, although a recent study indicated that 6q is not an autism carrying gene. Other suspicious genes are 4, 13, and 16.
A Developmental, Individual-Difference, Relationship-Based Approach to Evaluation and Intervention with Autistic Spectrum Disorders
Stanley Greenspan
Beginning with the 6 fundamental developmental skills, Greenspan�s keynote centered on the idea of �floor time� and building on the child�s interests. The 6 �functional milestones� are:
1. Able to take an interest in the sights, sounds, and sensations of the world and to calm oneself down
This is the ability to regulate and organize the world, and to experience pleasure
2. Able to engage in relationships and show preferences
3. Able to engage in 2-way communication using gestures and symbols, show reciprocity
4. Able to create complex gestures, to string together a series of actions into a deliberate sequence
This one involves complex problem solving and the use of many �circles of communication� in tandem
5. Able to create ideas, pretend play
When the child can demonstrate a purposeful use of language and be interactive with ideas
6. Able to bridge the gap between idea and reality
The basis of personality building. For nonverbal children, we can promote this milestone by offering choices to encourage thought differentiation, that is, �Do you want to have a snack, or go outside and play?�
Greenspan acknowledged that skill levels do not always show on standardized tests. His method is to use what the child is already interested in to increase their challenges. He advocates opening their circle of communication and interaction by playing into what they are playing with. His point is that the root of language acquisition is in affective, emotional relationships, not in rote, perseverative play. Adjusting to various social situations promotes language and personality growth.
However, when the disability is evidenced by word imitation, auditory difficulties, uneven visual/spatial perception, and motor planning problems, the use of the child�s waking time for appropriate interaction is more challenging (and necessary). By �appropriate� interaction Greenspan means we should try to match the child�s mood and energy level. If they are tired, rubbing their feet while saying, �Whose foot is this?� is more appropriate than intense physical play. The underlying goal is to create a continuous flow of interaction and keep it going as long as you can.
By their second year, children should be developing affective interaction/intent and showing motor planning. If they are not by 2, the absence of these skill causes lags in other developmental areas. In planning a routine of intervention, the child�s individual profile is important. Although similarities in diagnosis and age may exist, the differences from one child to the next outweigh the similarities.
(Web site: http://www.zerotothree.org/)
Group Homes Designed Specifically for People with Autism: A Working Model
Ruth Sullivan, Michael Grady, Jim Beirne, Marc Ellison
The underlying assumption for this talk and the work of the Autism Services Center is that living in the community is better than living in an institution. The presenters mainly went to the next steps, giving practical advice on how to start and staff a group home for adults with autism.
Houses on a corner lot should get preference because they are less distracting. If this isn�t possible, choose ones with the �quiet sides� (like garages or porches) to the neighbors. Consider the distance to the bus stop and the availability of extra parking places. The house should have room for 3 clients, 3 staff members, and room for guests/visitors. The clients each need their own bedroom. A shared bathroom is okay; single sex bathrooms are clearer than unisex.
Consider individual transition plans to curb the excitement and surprise of moving day. Take the transition a little at a time, with visits and room assignments prior to move in.
Budget for $119,000 per person per year to run the home. This includes approximately 25 direct care staff members per week per client in 3 shifts. Because direct care staff have the highest turnover, the Autism Services Center starts with 1 week of CPR and classroom fundamentals and 1 week of OJT. The staff must be supportive of and sensitive to the needs of the clients and must also have a say in the management of the program.
Sullivan indicated that the 4 most important components in running a home in the community are:
1. A sound philosophy of how clients will be treated (crisis intervention with dignity)
2. An experienced staff with careful, thorough client record keeping (papers, pictures, and videos)
3. A hands on staff that has management�s support
4. Longevity for the direct care staff
Panel of Professional Advisors Presentation
For this one each member of ASA�s PPA in attendance had 5 minutes or less to describe what they are currently working on. Holmes described the role of the PPA as providing guidelines for ASA theories and practices. Some extraneous notes I took (with no PPA member in particular to attribute them to) were these:
1. The debate about what�s best has more to do with education than autism. That is, �is phonics better than rote memorization for teaching spelling?� has nothing to do with what�s best for the student with autism.
2. The role of diet on the manifestation of autism is often overlooked.
3. Coordination and collaboration is the key to autism intervention: university to state, parent to professional, child to adult, agency to agency.
Dave Holmes is PPA co-chair of the PPA (with Lois Blackwell, who could not attend this year). He summarized the work of the Eden Family of Services (Princeton, NJ) over which he presides.
Margaret Creedon does sensory research.
June Groden (Groden Center, Providence, RI) investigates stress reduction and control. Her center provides out-patient and short term treatment.
Frank Robbins offers home-based consulting and program design.
Edna Smith-Herron works for the British Columbia School district, providing teacher training for autism (10-12 two-week courses each year).
Ruth Sullivan runs the Autism Services Center in West Virginia. Besides adult living in the community, ASC supports in-home services for school-aged clients and respite for care providers.
Bernard Rimland is Director of the Autism Research Institute, which summarizes autism (and other) research findings and provides information packages on vitamin therapy and the work of Defeat Autism Now!
Marie Bristol-Power is investigating the neurology and genetics of autism for the National Institutes of Health.
Harry Wright�s work includes diagnostic and medical issues, genetic linkage studies, and sibling studies.
Diane Twachtman-Cullen, principle of the Ad-Con Center, attempts to bridge researcher and clinician information processing.
B.J. Freedman is Director of Outpatient Services for Autism at UCLA. She is concerned with consistently applied research protocols for treatment.
Eric Schopler is founder of TEACCH at the UNC. He has compiled a database of over 3,000 North Carolina families and works with clients in programs of varying hours and intensity levels.
Glen Dunlap runs the Center for Autism and Related Disabilities at the University of South Florida. CARD conducts research in early intervention and severe problem intervention. He is editor of a new journal, The Journal of Positive Behavioral Intervention.
Luke Tsai is an autism researcher.
Gary Mesibov collaborates with Schopler at TEACCH, is interested in life-span development issues, and was recently named editor of the Journal of Autism and Developmental Disorders.
Anne Donnellan is a researcher at the University of Wisconsin at Madison. She describes her role as one who challenges the common knowledge about autism. She gave an example of why this is necessary by stating that the notion autism is a form of mental retardation is based on old data collection techniques (IQ test that were for nonverbal subjects, but were still motor-skills related).
Evidence that Autism is a Complex Metabolic and Autoimmune Disorder Triggered by Yeast and Elevated Metabolics of Yeast and Bacteria and Elevated Peptides from Wheat and Milk
William Shaw
Shaw is a clinical biochemist who runs the Great Plains Laboratory in Overland Park, Kansas. He believes that autism is the result of an immune system malfunction, that even the genetic factors influencing autism appear to be those affecting the immune system. An excess of yeast (candida) in the subjects produces an abnormal sugar derivative called arabitol which then converts to arabinose, a toxin that interferes with the �structure and function of critical proteins� and may even damage brain cell functioning. Emerging symptoms of yeast infection-based autism include: a limited diet, allergies, irregular sleep patterns, hyperactivity, and hypertonia.
(Web site: http://www.greatplainslaboratory.com/)
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