Autism Alliance



Parenting is hard, but it is a skill that is often assumed to naturally exist in parents. Virginia Satir, one of the first social workers in the area of family therapy, used these words:

“In some ways we got the idea that raising families was all instinct and intent, and we behave as if anyone could be an effective parent simply because he wanted to be, or because he just happened to go through the acts of conception and birth. This is the most complicated job in the world.”

As tough as parenting can be, it becomes even more difficult when our children are diagnosed with a chronic illness or disability. We go through a wide range of emotions including denial, anger, frustration, guilt, resentment, depression, and fear. All of these feeling are natural. After the initial shock and disbelief, parents may feel alone and helpless. It is an unbelievably stressful time – like nothing you have ever experienced before in their lives.

At this moment, when your child is first and foremost in your mind, parents must also learn how to cope with their own feelings and stressors. You will have days of wild emotional swings, with feelings of despair followed by moments of fulfillment. How you learn to take care of your own needs will determine how you are most able to effectively help your child. If you pinpoint the sources of stress and set up management strategies, you will be able to work through this inner turmoil while going through the process of building a relationship with your child.

In this article I will cover the following areas:

Internal Stressors
External Stressors
Physiological Stressors
Recognizing The Symptoms Of Stress
6 Strategies For Managing Stress

Read more

The Science of Making FriendsSocially challenged teens and young adults, such as those with autism, often have trouble making and keeping friends and can become easy targets for bullying, a situation that challenges their coping skills.
Now, a new book written by a UCLA researcher can guide parents in helping their children become more adept at establishing meaningful connections with their peers. An accompanying DVD and mobile application called FriendMaker is designed to provide real time advice and video demonstrations of appropriate behavior for the teens and young adults when they find themselves in a challenging social situation.
The book, "The Science of Making Friends," and the app are based on research done in the UCLA Program for the Education and Enrichment of Relational Skills (PEERS) Clinic, the only evidence-based social skills intervention available for teens and young adults with autism, ADHD, anxiety, depression and other social impairments.
The strategies in the book, while geared to the socially challenged, could also apply to any teen who is trying to fit in or is being bullied, said author Dr. Elizabeth Laugeson, director of the PEERS Clinic and an assistant clinical professor of psychiatry at the UCLA Semel Institute for Neuroscience and Human Behavior.
"Kids with special needs are already at a disadvantage. They have trouble reading social cues and interpreting the thoughts and feelings of others," Laugeson said. "Because of this, they are more likely to be teased and bullied, and they don't always know how to respond appropriately. Kids with autism in particular often exhibit odd behavior, which sets them up to be teased and bullied. They also tend to be isolated and alone, making them even easier targets."
The book is the only research-based approach for helping socially challenged teens and young adults and provides a step-by-step guide to help parents, educators and others to provide social coaching. It includes concrete rules and specific steps of social etiquette identified through research that improve conversational skills, expand social opportunities, identify strategies for handling peer rejection and develop and enhance friendships.
Lessons are presented using teaching narratives, followed by the key rules and steps of social behavior. A DVD companion includes video demonstrations of the book's lessons using role playing. The mobile app, for use on iPhones and iPads, provides an overview of the rules and steps with embedded video demonstrations, something the user could access as a social situation is unfolding.

“We know we can help the kids that go through the PEERS program, but this book was written for families that can't access PEERS," Laugeson said. "Parents are with their kids the majority of the time and are in a unique position to be social coaches for their children. Parents give advice constantly, but it's not always the best advice. With this book, they're not just teaching what they think their children should do, but what we know actually works through research."

One such scenario is helping kids deal with teasing and bullying. Parents might advise their children to walk away, ignore their tormentor or tell an adult. However, those behaviors can make them appear weak and an easier target. Laugeson said research has shown that when teased, it's more effective to respond with a comeback that shows what the bully said didn't bother or embarrass them.

"The Science of Making Friends" includes narrative sections for parents and shorter, kid-friendly chapter summaries for teens and young adults that outline the rules and social steps they should abide by, followed by chapter exercises and homework. Completing these exercises is critical, Laugeson said, because these are skills that must be practiced.

"Many people think of social skills as an art, skills that you are born with, that come hardwired," Laugeson said. "We think of social skills as a science, and we call this book, ‘The Science of Making Friends' because we believe social skills are something you can study and something you can teach."

The book is published by Jossey-Bass, a Wiley imprint, and is available on Amazon. The mobile app, FriendMaker, is available through iTunes.

Transition Tips
Continued - From Fall Newsletter

Transition for students with disabilities who are getting ready to graduate high school and/or turning 22, thus exiting the special education system, often is one of the most challenging aspects of being a parent of a child with disabilities.

Transition to adulthood brings many fears and worries to the surface. How is my child going to function after leaving public school? What is s/he going to do? Is s/he going to be able to work and live independently?
As part of its Transition and Youth Leadership Goal, Easter Seals of Massachusetts met with focus groups of students, parents, and human services agency personnel in the summer of 2011. The groups reaffirmed that there continues to be a need for better planning and services to support youth, their families and the schools. A representative response from one participating teenager was this:

“I was not given any formal instruction to help me advocate and plan for college. I learned to advocate for myself over time. I was not taught how to ask for accommodations for my disability – I try not to bring it up so I won’t be a burden -- I just want to be accepted and hired in a job someday.”

Early planning between the school and parent is critical starting at age 14. Some of the areas to
focus on should include the following and be reflected on the student’s IEP and Transition Plan:


-Opportunities for vocational training and support, with job coaching as appropriate
-Conduct vocational assessments at age 14 and at age 18 to identify interests and assess skills
-Consider assistive technology assessments as needed
-Explore community transition and life skills activities leading to living , working and/or college, such as travel training, service learning, navigating adult services, SSI, and housing
-Develop personal portfolios, including resumes
-Explore mentorships with other individuals with disabilities and identify role models
-Support student with development of self-advocacy and self-determination skills
-Support student in learning to initiate for him or herself

Some of the above activities could be conducted over an extended school year as well


-Referral to Human Services Agency or Bureau of Transitional Planning at least two years prior to
graduation or turning age 22
-Ensure that appropriate agency is invited to Team Meeting at least two years prior to graduation or
turning age 22
-School districts in partnership with parents should aggressively engage in external outreach to identify human services agencies and/or community supports and resources, including Independent Living Centers
The “playing field” dramatically changes when a student leaves the special education system of entitlement and begins to navigate the adult systems of eligibility. The rules are different. Unfortunately, the adult services systems are fragmented and many individuals with disabilities are placed on wait lists for continued services and supports.

However, it is clear that the Massachusetts Legislature is concerned. For example, there is legislation pending that would strengthen human services agencies' involvement with students in transition and while they are in school.

Two bills have been filed to support transition; they are:
H. 985: This bill would require a representative from a human services agency to attend IEP meetings at least two years prior to a student turning 22 or graduating
H3720: This bill would provide for a “ Specialist Teacher Endorsement in Transition Services” to be created by the Board of Elementary and Secondary Education

Lastly, another great resource on transition has been put together by the Disability Law Center in collaboration with the Federation for Children with Special Needs, Massachusetts Advocates for Children and the Center for Community Inclusion.

This manual can be accessed at:


By Pamela Kaufmann-Educational Consultant

Did you know that youth with disabilities are;
Less likely to enroll in post-secondary programs than were their peers in the general population (45% vs. 53%)
Less likely than their general population peers to be employed after leaving school (57% vs. 66%)
Less likely than the general population to have a checking account (46% vs. 68%)

In addition, the median earnings of individuals with disabilities ages 16 and older are $18,865 vs. $28,983 in the general population.

Alongside with transitioning to public school at age three (3), transition at high school graduation or turning age 22 is the most important next step for students with disabilities.

Age: In Massachusetts, beginning at age 14, or sooner if determined appropriate by the IEP team, school age children with disabilities shall be entitled to transition services and measurable post-secondary goals.
Definition: “A coordinated set of activities designed to be within a results oriented process that is focused on improving the academic and functional achievement by the child with a disability to facilitate the child’s movement from school to post-school activities”. If needed, the IEP Team must include appropriate goals related to post-secondary training, education, employment and independent living skills in the student’s IEP.
The Massachusetts Department of Elementary and Secondary Education require that school districts use the Transition Planning Form (TPF). See MADESE has training modules and sample forms which are quite useful.

Summary of Performance: For every student exiting special education at graduation or at age 22, a summary of performance must be prepared by the school district.

Other Actions

1. School Districts must make a 688 referral at least two years before the student graduates or turns age 22 if they believe that the student may be eligible for adult services through Chapter 688. Students who receive services under an IEP and receive SSI/SSDI and/or are on the registry at the Massachusetts Commission for the Blind (MCB) are automatically eligible for Chapter 688. Other students who may be eligible are those students with severe disabilities who are in need of continued services and are unable to work 20 or more hours per week in competitive, non-sheltered employment at the time they are ready to leave school. Also students who receive services from the Department of Youth Services (DYS) or the Department of Children and Families (DCF) and are on an IEP or a 504 Plan may be eligible.

School districts must invite representatives of human services agencies who may be working with the student after exiting special education to the Team meetings where transition is being discussed.

3. Students must be invited to the Team meeting where the Team discussed the student’s transition planning.

4. Request updated vocational assessments, assistive technology assessments, and psychological. (Some state agencies will require a current psychological not less than one year old.) Your school district may have the staff for vocational assessments or may need to contract out to a collaborative or a private agency such as Easter Seals.


Federation for Children with Special Needs has transition workshops:
Institute for Community Inclusion:
“Transitioning Teens with Autism Spectrum Disorders: Resources and Timeline Planning for Adult Living” This is one of the best documents on transition planning I have seen which is specific to Massachusetts.

The National Secondary Transition Technical
Assistance Center (NSTTAC) has identified sixteen (16) predictors of Post-school success:
Career awareness ***Community experiences
Inclusion in general education ***Interagency collaboration
Occupational courses **Paid employment/work experience
Parental involvement ***Program of Study*** Social Skills
Self-Advocacy/self-determination*** Student support
Self-care/independent living skills*** Work Study
Transition program ***Vocational Education
Exit exam requirements/high school diploma status

Coming Next: Individual Stories about Transition Planning


The Fordham Institute just released a paper entitled “Shifting Trends in Special Education” by Janie Sculll and Amber M. Winkler, May 2011 ( The paper examines states’ special education data over the past ten (10) years looking at students and personnel. Some of the notable findings are highlighted below:

Disability Trends

There is a national decline in the percentage of students identified with a disability, from13.8% in 2004-05 to 13.1% in 2009-10
Students identified as Specific Learning Disability (SLD) declined from 6.3% to 4.9% nationwide. In Massachusetts the figure is even more dramatic, declining from 9.8% to 5.9% from 2001-02 to 2008-09. Another slice of the Massachusetts picture is that the numbers of SLD students went from 58.7% to 33.3%, a 42% reduction.

Students identified with mental retardation, now called intellectual disability by Congressional action, declined from 1.3% to .9%. Researchers speculate that many children previously identified with mental retardation are now identified as children with autism. I also believe that we are doing a better job of accurate diagnoses.
Autism and Other Health Impaired (OHI) increased dramatically. Students identified with autism quadrupled and OHI more than doubled. Yet, autism and OHI represent .8 and 1.4% respectively of all students in 2009-10. Massachusetts ranked 5th in the nation in terms of its proportion of students with autism.


Massachusetts is second in the nation in the rate of students with disabilities, 17.8%.
There has always been considerable discussion as to the high numbers of students with disabilities in Massachusetts. Many factors contribute the high identification rate in Massachusetts.
Massachusetts has one of the best Early Intervention

Programs in the country. Our medical community does a superb job of early identification as well Many children born prematurely in Massachusetts are surviving because of the quality of medical care. There is a range of strong pre-school programs across the state. Massachusetts relies heavily on the disability category “developmental delay” serving children ages 3-9. The Developmental Delay disability enables school districts to provide special education services without labeling a student in his/her early years of schooling.

The Fordham report also notes that in Massachusetts special education is “a source of pride” and that the state “has nurtured a culture in which it considers itself a leader in special education”. After all, Massachusetts’ state special education law, Chapter 766, passed in 1972, preceded the federal Individuals with Disabilities Education Act by three years and was a model for the federal law. Another factor noted by the Fordham report is that Massachusetts is a relatively wealthy state, where many parents have the resources to pursue due process. In addition, many parents move to Massachusetts for the specific purpose of accessing special education programs. In April, 2011, Autism Speaks ( identified the Boston metropolitan areas as one to the best ten (10) places to live if you have a child with autism.


Nationally special education represented approximately 21% of all education spending in 2005.
From 1996 to 2005, 41% of all increases to education went to funding special education. Per pupil spending for special education students are estimated to be double that of expenditures for general education students. However, this ratio has been constant since the 1980s.


Use of paraprofessionals has increased from 52 paraprofessionals per 1000 special education students in 2001-02 to 66 per thousand in 2008-09. Nationally, combining teachers and paraprofessionals, schools employed 129 for every 1000 special education students. In Massachusetts, the combined figure of teachers and paraprofessionals is 145 per thousand special education students.

I do believe that there is an over reliance on the use of paraprofessionals to provide direct instruction to special education students. I would like to see more special education teachers vs. paraprofessionals as the teachers have the training and qualifications. Yet, there is a national shortage of special education teachers.

In summary, I agree with the Fordham Institute Report’s conclusion that we need to carefully review these shifting trends for greater study and meaning as to what drives some of the declines. The Fordham report speculates that the decline in the SLD population may be due, in part, to improved efforts within general education to address students’ difficulties prior to referral to special education or RtI, Response to Intervention. Thus, it is essential to examine and ensure how all teachers can differentiate learning for all students. Lastly, we should look at the models of service delivery i.e. pullout vs. push in or inclusion.

Except for the SLD decline, few of these trends are a surprise. Yet, taken together, they are daunting and continue to contribute to the competition for resources between general education and special education.

Special ed in Framingham: An overview

By Pamela Kaufmann/Guest columnist
Metrowest Daily News
January 18, 2011

On Dec. 2, 1975, three years after the enactment of Massachusetts' Special Education law, President Ford signed landmark legislation, the "Education for All Handicapped Act", now called "Individuals with Disabilities Education Improvement Act." In his signing statement, President Ford stated "the funding levels proposed in this bill would simply not be possible if Federal expenditures are to be brought under control and a balanced budget achieved over the next few years."

In 2011, we still await full federal funding and a balanced federal budget. Similarly, Massachusetts has failed to fulfill its special education funding commitment through underfunding the more recent Special Education Circuit Breaker Reimbursement program. Moreover, with no federal stimulus money expected in FY 12, Framingham is being hit with both greatly diminished Circuit Breaker funding and loss of federal stimulus funds.

Given the above and current economic projections, special education can overwhelm a local school budget. Ongoing competition between general education and special education persists for limited funding resources. Yet, this is not about blaming special education nor blaming students with disabilities. State and federal special education laws exist for good purpose: to ensure that students with disabilities receive a "free appropriate public education." The funding problem is complicated by economic, social and medical factors.


In July 1997, the Boston Globe wrote that the Town of Framingham is a microcosm of changing national demographics. Today, Framingham continues to reflect the country's population and economic transformations:

- The percentage of Framingham students on free and reduced lunch increased from 15 percent in 1984 to 32.6 percent in 2010.

- Framingham's student mobility rates are up an average of 13.8 percent from 2008-2010.

- Limited English Proficient (LEP) learners in 2010 represented 15.6 percent of the total Framingham student population.


- Increased numbers of children at age three found eligible for special education. In 1997, there were 31 pre-school students with disabilities in classrooms as compared to over 100 today (not counting speech only students). Such increases correlate with state and national trends, predominantly attributed to increased numbers of children with autism and children surviving premature births with moderate to severe disabilities.

- Increased medical needs of students with disabilities requiring nursing and medical oversight.

- High numbers of students in state-approved Special Education Out of District (OOD) programs. Students are recommended for an OOD placement by a school-based team when the severity of the student's disability and the intensity of his/her needs no longer can be met in the public school, i.e. medical, behavioral, emotional and/or cognitive. While OOD programs serve students with the most severe disabilities and challenges, they are expensive e.g. FY 11 statewide average tuition for day schools is $58,098; $163,160 for residential schools. These prices are comparable to approved programs in other states.

- Special education transportation with no state reimbursement.

- Disproportionate numbers of students attending The Learning Center for the Deaf (TLC), an outstanding school with a national reputation. Annually, one to two families with a child who is deaf move to Framingham for their child to attend TLC. Framingham's rate of students, who are deaf and attending TLC (14 to 21 students/year depending on the year), can be anywhere between two to three times the naturally occurring incidence rate. As Framingham schools have no programs serving deaf children, it pays the TLC tuition for Framingham students.

* State Special Education Circuit Breaker Reimbursement to local school districts has declined by 32.6 percent in 2010 and by 35 percent in 2011. The Circuit Breaker legislation authorizes a 75 percent reimbursement for high cost special education placements based upon an excess cost formula. From FY 06 to FY 08, the reimbursement was at the 75 percent level. However, reimbursement dropped to 72 percent in FY 09, 42.34 percent in FY 10 and 40 percent in FY 11. Had circuit breaker been fully funded in FY 10, Framingham would have received an additional $1.4 million and would receive an additional $1.7 million in FY 11. Fortunately, federal stimulus monies offset some of the reduced circuit breaker reimbursement by 86 percent in FY 10 and by 34 percent in FY 11.


- OOD tuition Increases due to special education private schools' reconstruction (increased tuition rates as a result of state approved staffing and building changes). These costs can impact Framingham's school budget by $250,000 to $500,000/year. Twenty OOD programs have applied for reconstruction in FY 12.

- High numbers of move-ins of special education students already placed in OOD placements by their prior school district. In FY10, 13 percent of move-ins to Framingham (approximately 26 students) was in an OOD placement. That represents an annualized cost of $1.5 million, using the FY 11 average day rate. Temporary relief is provided via a state law governing move-ins, e.g. a school district pays the OOD tuition and related transportation costs for move-ins the following fiscal year. For move-ins after April 1 the prior school district continues to pay the tuition through the next fiscal year. OOD tuition for out-of-state move-ins is paid in the move-in year. On the other side of the ledger, half of these costs are offset by students leaving OOD placements. Annually, 12-15 students will turn age 22 or exit their OOD placement.

- In addition, approximately 25 percent or 20 to 25 students/year of move-ins require a self-contained class. Of that number, there are usually some students requiring additional classroom staff due to their significant disability, the need for low student/teacher ratios, and/or to ensure the safety of the student and others in the classroom. In FY 07 and FY 08, Framingham Public Schools established a special education contingency fund for unanticipated costs. The contingency fund was used primarily for 1:1 aides representing approximately $150,000 to $200,000 depending on the year. Aides were specified in the students' Individualized Education Plans (IEPs) which the district is legally obliged to provide.


- Increased class sizes.

- Teachers become less tolerant in supporting inclusion of students with disabilities in their classrooms due to larger class sizes and increased classroom duties.

- Increased referrals to special education due to reduced general education and remedial education supports.

- Delays in returning OOD students to public school settings or prevention of students placed in OOD schools due to limitations of in-district programs e.g. lack of space and/or at capacity special education classes.

- Fewer elective course offerings, more study halls, reduced access to AP classes at Framingham High School leaving one to question Framingham High School's future as a comprehensive high school.

- Fewer after school supports and rising fees resulting in fewer students ability to participate in athletics, theater, and instrumental music, for example.


- Reduced staffing in libraries limiting student access to literature and reading opportunities.

- Increased staff time spent on student discipline and behavioral issues given reductions in support staff. While hardly an all inclusive list, these and other cuts impact the quality of education in Framingham schools.


Framingham Public Schools have enjoyed an excellent reputation over the years, particularly given its demographics. Its historical commitment to comprehensive educational programming for all students has generated much pride and confidence among parents and district staff. However, ongoing cuts to general education will continue to erode Framingham Schools. Most likely, such erosion will result in increased referrals to special education, continuing a vicious cycle of special education costs consuming a disproportionate share of the entire district budget.

I urge the School Committee to consider the following:

- Maintain and develop supports within general education to reduce referrals to special education, i.e. screenings and early interventions.

- Develop and implement 504 plans for general education students with disabilities who only need accommodations and not specialized instruction in special education.

- Reestablish a special education contingency fund to support unanticipated staff needs due to the severity of students' needs and in accordance with their IEPs, whether move-ins or not ($200,000).

- Develop an OOD budget that includes costs related to unanticipated move-ins ($500,000).

- Maintain the current co-taught inclusion classes in Framingham Schools. A recent evaluation of the elementary co-taught inclusion classes indicates that over one-third of students with disabilities in these classes would otherwise be in self contained classes. Thus, co-taught inclusion classes are funding neutral. Students with disabilities who are educated in co-taught inclusion classes perform better on district and state assessments.

- Review space within the district for new or expanded program options to reduce referrals to OOD placements.

- Aggressively lobby for full funding of the Special Education Circuit Breaker Reimbursement.

Framingham Public Schools is at a watershed of public and staff confidence. The School Committee, community, parents, and staff must speak up in support of comprehensive educational programming and services to meet the diverse learning needs of Framingham's students. Without a level service budget, District goals are compromised and Framingham Public Schools' commitment to the "most complete development of each student" is jeopardized.

Pamela Kaufmann is the former Director of Special Education for Framingham Public Schools.

Alternative to Social Skills Classes

Let me first say that I understand this won’t work for all kids on the autism spectrum, but it can work for many of them. It just takes a lot of patience, hard work and time.

When our children get to be around 14 to 16 years old, they need to be with kids their own age in a natural settings to really learn social skills. The best thing we ever did for our son was to help him get a job. Now a job can be mowing the neighbors lawn, walking dogs, stocking shelves, painting, planting, folding, the list goes on and on. The right match is the important thing. Letting the employer know about your child is the other. Help your child tell the employer what they need to be successful. It may be that he or she needs to have a written list of duties. They can only work two afternoons a week. They perform better in the am and the same applies for the employee. Let your child know what is expected of them. Assure them, that everyone makes mistakes at first and that with practice it will become easier and easier.

One of the best motivators is money. That is no exception for our kids on the spectrum. They want their own money to buy music, clothes, jewelry, games and more. If you look at what most typical teens are doing, you will fine they are into sports, music and/or have a part time job. Many of our kids on the spectrum have a hard time with team sports, however individual sports can be a great alternative as well as music of any kind as long as they are coming in contact with the outside world.

A job usually forces people into social situations with the general public. My son’s first work experience was selling Christmas trees. He needed to learn to tie up the tree onto people’s cars without scratching the cars. He needed to learn about the different kinds of trees. He needed to be able to direct people to certain areas. He needed to be nice to people. He learned very quickly the nicer he was, the larger his tip was going to be.

After the holidays he began sweeping floors, unloading deliveries and stocking shelves. In the beginning he wrote everything down. His boss would make a list for him of four or five tasks he needed to complete. He would add comments to that list. He would refer to his notes a lot. His co-workers and his boss were extremely patient with him and gave him plenty of time to learn what was required of him. Pretty soon he started not to need his notes and by now he was really enjoying those paychecks.

Three years later my son is still working at the same place and now knows just about everything that needs to be done there. His co-workers often call him to switch hours and his boss often calls him to help him out in an emergency. He has made friends and is proud of his accomplishments. His self esteem has grown leaps and bounds. He has his own bank account and has saved enough money to buy a small fishing boat, all on his own.

Now, I know many of you are saying, my child could never do that. I said that very same thing. I have underestimated my son so many times. All I can say is that you will never know if you don't try. There are so many options for employment. Think outside the box and don't underestimate your child.

Many years ago when my son had a one-on-one aide, she treated him as though he was typical. This made me crazy, after all he was a “special needs” child. If we want our kids to be able to function in the real world, we need to treat them as though they can. There's plenty of time for spoiling them and loving them but if you want them to become able in this world, treat them as though you believe they are and they will step up to the

My sincere thanks and praise go out to the owners and other employees of the store where my son works. They gave him and others like him a chance to prove themselves. They were patient, kind, understanding and showed us that our community can be there to help if we let them.

Written By: Nannette Ohman

Archived Newsletter Articles

The Dangers of Magnets

picture of a magnetI am a mother of a 25 year old young man with Autism. My son Sean has made great strides in his life and is doing very well living in a group home in Webster, Ma. Although in many ways he is a young adult, unfortunately, he has Pica. This is a very challenging behavior where he will put inedible objects in his mouth, sometimes swallowing them. This is a behavior that is common with small children and individuals with Autism. This behavior has increased dramatically lately.

One of the other young men in the group home collects magnets and was stacking them on a counter at the group home. These were very small, round magnets that are often found on toys. They are probably no bigger than a dime and about 3 times as thick. Without anyone noticing, my son picked up a stack of about 10 magnets and swallowed them. It wasn’t until the other man was putting his game away that it was noticed that they were missing.

The staff at the house asked Sean if he had the magnets and Sean initially said no. After a thorough search of the house during the overnight, the staff asked Sean again if he had the magnets. He eventually admitted to his one-to-one, (the person that he is the closest to) that they were in his tummy.

The staff brought Sean to the ER in Webster where they did an X-ray and found that the magnets were indeed in Sean’s stomach. Sean was transferred to UMass in Worcester to undergo an endoscope to retrieve the magnets. This whole process took another several hours.

Before Sean went in for the endoscope the doctor said that there was nothing to really worry about and that they suspected that all they would have to do was go in and scoop them out and Sean would be fine. Well that was not the case. After waiting what seemed like forever in the waiting room with the group home manager and his one-to-one, the nurse finally came out to get me. I went hurrying in, asking the doctor if we should follow up with a lead test. His response was that right now that was the least of our worries. I stopped in my tracks. It turned out that the stack of magnets had separated and were in his intestines. One was on one side of the intestines and more were around the bend. The magnets were attracting to one another and actually burrowing a hole in his intestines. He showed me the pictures and it was very frightening just how deep the magnets had burrowed into the lining. The doctor said that they were able to get the magnets out but if it had been an hour later he could have died from a perforated bowel. They had to do follow up CAT scans to make sure that the hole had not necrosed or gotten worse. This turned out to be a 14 hour ordeal in the ER. Sean was on a very strict diet, antacids and antibiotics for 6 weeks to be sure that the holes healed.

So many times when Sean would swallow items the treatment was simply “wait for it to pass”. This obviously would have been deadly if we had chosen that route. I just want to get the warning out to parents of young children and those with Pica to be very diligent about the dangers of magnets. The group home was wonderful and I believe that they did everything that they could do for Sean. They have increased the monitoring of Sean so that he now has a one-to-one around the clock and have put limits on where the other individual can use his magnets to ensure that nothing like this could happen again.

How I Live My Life
Lessons in Love

Today, 1.5 million Americans and their families are affected by autism.   A person who has influenced me a great deal in my life is my 15-year old brother Andrew who was diagnosed Autistic at age three. Having a sibling who is autistic has allowed me to develop a greater respect for honesty and integrity for myself and others.  Andrew’s disability has provided me invaluable amount of understanding and knowledge in defining what I consider to be really important qualities and behaviors on how I live my life.

Andrew is a terrific brother.  He has a few distinct personality traits that really stand out.  Andrew is always honest and speaks exactly what is on his mind.  Sometimes this worries me, because I’m not sure what he might express at any given time.  Andrew has definitely made an impression on my friends, because they always tell me that he expresses exactly what everyone is thinking, but my friends are too afraid to actually say it.  Observing Andrew’s honesty and straightforward communication has made me realize that it is all right to be honest in communicating with my parents, co-workers, friends, teachers, and coaches.  I have learned that by being straightforward, I can talk about things that are bothering me, resolve problems, and make sure my contributions are heard.

Another indirect influence my brother Andrew had on me is the ability to understand that everyone has issues, no person is perfect, and that there is no reason to ever feel superior to someone else.   Often I have heard and witnessed my peers making demeaning comments about less fortunate people.  I feel badly that they are not mature enough to understand and I try to explain what I know, because of my brother’s autism.  Andrew has taught me to be a kinder and more considerate person and friend towards all people, but especially those with a wide range of challenges and disabilities.

In the summer of 2005 and 2006,  I volunteered at Camp Arrowhead in Natick, Massachusetts.  The camp is for handicapped and special needs children.

Volunteering expanded my knowledge beyond Andrew’s autism, given that there are numerous physical and verbal handicaps that affect so many children and families each day.   This positive experience gave me an opportunity to use my athletic skills to engage my assigned camper in physical games when they could participate.  My interpersonal skills and compassionate attitude allowed me to reach out as a friend and mentor, and make certain that my camper was having summer fun and memories that they will remember forever.

As I begin preparing to move from high school to college, I consider myself very fortunate to have learned so much about life by living with my brother, who faces challenges that most of us don’t.  Although I would do anything to see my brother live a life without autism, I would not change anything about him.   Andrew has influenced my life in so many ways. Watching him handle everyday challenges with such determination has taught me how to handle many different situations.  I love being Andrew’s older brother and this inspires me to continue to strive for the best for both of us.

James A. Clover, III
Age 17
Senior in High School
sketch of two people 

Elementary Education Project!!

Thanks to two great grants, one from The Doug Flutie Jr. Foundation for Autism and the other from The MetroWest Community Health Care Foundation, we have funding for a terrific new project for our elementary schools in Metro West. 

Our goal for this project is to educate our elementary school community about autism.  When we say educate our elementary schools, we mean our janitors, our secretaries, our school nurse,  the cafeteria workers well as the  teaching staff.  All these people come in contact with our children on a daily basis and some of them have no idea what autism is or why our child is acting the way they are.  We want to educate them and educate young children about their peers as well.

 This is a great opportunity that will allow us to present to 30 elementary schools in the Metro West area.  A panel of experts in autism have created a one hour long
presentation that we will be delivering to school staff in the fall of this year. Along with our presentation, each school will receive a fabulous package of materials all related to autism spectrum disorders. This extremely valuable package will consist of several videos including our own “Straight AAA’s All About Autism”,  as well as 8 to 10 books which will remain in each school’s permanent collection.  Our hope is that we will bring information to those who need it most and that it will be shared over time with community, friends, family and co-workers.

Below is a list of towns whose elementary schools will be receiving our training. Staff time in elementary schools is extremely precious, therefore some schools have declined our offer for this presentation.  If your town is on the list, please help us by
encouraging your principals to invite all their staff to our presentation. If your town is not on the list we hope that they become more interested in the future and if the need arises  we may be able to obtain a second round of grant funding to continue the project. 


If you have any questions or concerns regarding this project, please call Nannette at (508) 652-9900.


It’s finally Here!   

Children’s Ho
spital Boston’s Autism Language Program

Some of you may remember Dr. Howard Shane from Children's Hospital as our guest speaker last December, when he gave us a sneak peak at some language based software he had been developing for the past few years.  Well, it’s now available for everyone and we have it.  We will have it available at our office for families to pre-purchase review and then we will eventually donate it to some lucky family!  This software was created with our kids not only in mind, but testing it out along the way, with terrific results. 

Puddingstone Place Software

An interactive virtual environment that lets children move from room to room in Puddingstone Place, a two-story house with seven photo-realistic rooms. Rich in sound, graphics, and animation, this interactive house incorporates common household objects that can produce their associated sounds, movements, and labels (names) when individuals activate them. For example, the tea kettle in the kitchen whistles and generates steam, producing a text label and voiceover for the word 'kettle.' Puddingstone Place is designed for a diverse group of individuals, including those with auditory, word retrieval, and language learning difficulties, especially those on the autism spectrum. The software can be customized for different ages and learning difficulties. When tailored for children, the program starts up with an interactive, engaging character named Champ who pops up to introduce each room. Children will enjoy visiting the Playroom to play the interactive Dress-Up Champ, Sticky Bubble Gum, and Orchestra games. The software is flexible enough for use with adults, who can turn off Champ and customize the software to assist with word retrieval, and modify the cueing controls to meet their personal needs.
Software requirements: Windows XP/2000/ME
Price: $129

For more information visit the website at: and click on Puddingstone Place

Or call us to make an appointment to review this fabulous software program. 

Children's Hospital is also offering  a terrific music program called Learning Together with Music, which consists of activities that teach language and social communication on an
innovative CD to promote language learning at home and in the classroom.  It includes
instructional video and teaching guide, music video clips, interactive games and
downloadable sheet music.  This can also be found at the site listed above.

Hopkinton Pharmacists
Specializing in Compounding for Customized Medications 

Dennis Katz and his TEAM of compounding specialists at Hopkinton Drug have the ability to meet the special needs or conditions in medication. It is their goal to aid the physician in expanding the possibilities of treatment available.  And, while compounding takes time – researching, measuring, mixing, they do all this because they are making this medication custom to the  patient. The Hopkinton Compounding pharmacists provide special needs such as:

Pediatric suspensions for antibiotics, steroids, etc., flavored according to the patients taste-apple, cherry, chocolate, root beer, just to name a few.  Some flavorings are available as colorless liquids to avoid any dye allergies.

Transdermal medications to be applied to the skin for a topical application rather than systemic absorption of medicine.

Chewable troches instead of  liquid for traveling or unit doses of medications for day care, school or camps.

A capsule that could contain a combination of drugs to eliminate swallowing a “whole handful of pills”

Dennis has also created special vitamins that are palatable for people who have feeding sensitivities and issues.  They also work with people with gluten and casein allergies, who need nutritional supplements, and need heavy metals detoxification. This pharmacist who is doing this ground-breaking work can be reached at:

Hopkinton Drug
52 Main Street, Hopkinton, MA 01748 
508-435-4441 or 508-439-4441

Training Mouse
One Family’s Story

mouse“Hey you, would you like to meet my new dog?” I looked over at my son, Shane. Did he just say that??? I couldn’t believe my ears and my heart skipped a beat. It was the first day of what we had coined “Mouse Training.

Shane and I, along with Shane’s new service dog, Mouse, were at a CVS in a Worcester mall. Thankfully the clerk immediately jumped into her role and said, “Why yes, I would.” Shane very confidently went on to introduce his new dog. I was filled with joy, mixed with relief, and whole lot of hope. Had we done it again? Had our instincts guided us down the right path, again? I could not wait to call my husband, Ray and share this small triumph. Day 1 of “Mouse Training” and already things looked promising. 

At three years of age Shane was diagnosed with Autism. Receiving this diagnosis was devastating, to say the least.  The world of autism was new to us and very frightening, we had a lot to learn.  So our journey began …

For the last 10 years our family has been very fortunate to work with many, wonderful therapists, teachers, doctors, and consultants. We’ve joined many support groups, gone to many trainings, workshops, and conferences to learn and grow in our knowledge of autism. This was now our  world.

Many times along the way we’ve been able to find answers through the professionals we consult, latest research, books, along with other friends and parents.  However, Ray and I often find it is our gut feeling, our intuitions, that usually lead the way. Admittedly, most of the time it's a hit, sometimes it's a miss. Often programs, therapies and potential opportunities just feel right, just like this day with Shane’s simple exchange with the CVS clerk.  I wondered and hoped if we had been lucky enough to be right again.    
It was a year ago that I learned of a new line of service dogs for children with autism. These dogs are often referred to as “Social dogs” or “Therapy dogs.” Ray and I watched documentaries and began to read about the successes families with a child on the autism spectrum were having with a canine companion. A social dog would help with Shane’s therapeutic goals of increased socialization, task adherence, and sensory regulation. Out in public, with Mouse by his side, Shane would be able to work on his social skills by drawing people in to converse with him about what else his dog!

Shane has a love for animals like no other. He is happiest at a zoo or a pet store where he is seen with a smile from ear to ear. Elephants have always been his favorite, but animals in general have an interesting effect on him.  We see a calmness that comes over him while watching animals of all kinds. We were intrigued; we felt given Shane’s social challenges and love for animals this was an opportunity we should consider. 

In January of 2005, Ray and I took Shane to NEADS (National Education and Assistance Dog Association) in Princeton, MA for an interview. The interview process was very thorough with questions regarding Shane’s various activities, his moods, his anxieties and his behavioral issues. Most of all they wanted to learn how Shane’s autism affects his daily living so they could then begin the matching process for the right dog and train her according to Shane’s individual needs.
It soon became obvious to Ray and I that not only were they trying to plan for a match for Shane, but with us as a family to take on such a unique dog.  This needed to work both ways. We were thrilled when Shane was accepted to the program, then the waiting began. We waited an entire year and then finally, the week before Christmas 2005 we received the long awaited call … Christy, the trainer at NEADS, said they had a match for Shane and that she was an adorable Chocolate Lab named “Mouse”.  Needless to say we were ecstatic!

On January 9, 2006 we started our training. With Christy, Mouse had already been through intensive training at NEADS, now Shane and I needed to learn how to work with her. Initially, I trained for two days then Shane joined me for another four. We stayed at the NEADS campus house and trained each day. We learned so much and were so fortunate to work not only with Christy, but Dan as well, NEADS’ Autism Specialist. Christy, Dan and myself provided the perfect team to teach Shane all he needed to know about his new dog. We worked hard and on January 16 our hard work had paid off. Shane, Mouse and I passed our certification and brought Mouse home. We had one happy boy, and an equally happy dog!

We also learned that it would be sometime before Shane could manage Mouse himself and this has become a goal. 
Our family is so thankful for this incredible opportunity; the people at NEADS are truly wonderful and have been there every step of the way. We are all absolutely crazy about Mouse, she is amazing! She is so lovable and friendly and feels like a “LeBlanc” already! Each day we see Mouse and Shane connect more and more, he loves to play chase with her, (“Mouuuuse, come get me!”), feed her, brush her, and walk her. I love to hear his giggles as Mouse showers him (literally) with kisses when he gets home from school.

mouseThrough Mouse, Shane is learning many valuable lessons, he’s learning to take care of her and that she needs him as much as he needs her.  He is also learning that people are very interested and curious about his dog, and that it is he, who holds the answers as well as the ability to share them. Ray and I enjoy watching them together, we see a boy who now walks a bit taller and shows an air of confidence we hadn’t seen before. Very quickly they are becoming pals. Shane is very proud of her and loves to introduce her. Usually he introduces her by her name but every once in a while we’ll hear him say, “Would you like to meet my new friend, Mouse?”  For this we are most thankful!

For more information, please visit NEADS online at

One last request, when you see Shane with Mouse, ask him about his new friend!

Stephanie, Ray and Shane LeBlanc (Mouse too!)

Change is in the Air

As many of you know, there have been a few changes within our agency given the recent funding from the New Division of Autism.  The most exciting change for us is that we have been able to support my position as Executive Director as a full time position as well as hire someone as our Operations Manager.  We feel really lucky that we've  been able to hire Allison Daigle for this new position.  Many of you know Allison and for those of you who don't, you will soon.  Allison brings a new prospective and endless energy to this new position.  Allison has two children, Justin, 10, who is on the autism spectrum and Faith, 7,  who is typical.  Allison has been married to her husband, Mike for 17 years and lives in Framingham.  She faces many of the same challenges as many of you with both of her children.  She brings new ideas and a fresh outlook to our agency.  I  hope you will all welcome her with open arms and open hearts. 

Having this new support for my position and Allison's  will allow us to be in the office more.  In previous years, funding only allowed us to be open Monday, Tuesday and Wednesday, 9:00 - 1:00 pm.  Now we will have office coverage Monday through Friday, 9:00-5:00pm. If you need us for a recommendation, advice or just to listen, we will be here!  But always call first!

For the past few years our office has been a very small space that the Morse Institute Library has donated to us.  As of April 1st we will have a new office.  We will still be at the Morse Institute Library but we will be on the first floor, all the way to the back and right.  It's a great office, sunny, private and spacious.  It will give us the opportunity to conduct intakes in private and to meet with you in a very comfortable setting.  We hope you will stop by and visit!  Again, please call first!

And last, but certainly not least, are the changes that have been incurred by the new funds that have been provided by the New Division of Autism.  These new funds have been directed at the slightly older and higher functioning child.  While we are thrilled to be able to offer funds for social skills programs, vacation camps and camp scholarships to these children, we want you all to know that we are very committed to serving all  families on the autism spectrum and will  try our hardest to secure funding and provide services for everyone that is in need. For the past 12 years we have grown with our families and we promise that we will continue to grow with our families as their needs change.  During this time of transition we ask for your patience and continued support.  Thanks!

The New Division of Autism, What does it mean for you?

I am sure that like us you have been wondering how this new division might impact you and your child with Autism Spectrum Disorder. As you are likely aware, the new Autism Spectrum Division recently received a legislative allocation of $1.2 million for the 2006 Fiscal Year that runs from July 2005 to June 2006. These monies will be used to develop the infrastructure within the eight DMR (Department of Mental Retardation) funded Autism Centers, to coordinate training initiatives for First Responders, pediatricians and teachers, and to create statewide autism resource materials.

The Autism Centers through out the state will be the front door for families. As in the past, the centers will offer coordinated Information and Referral Resources including information about support groups, trainings and activities for children across the autism spectrum.

Given that this is a new Division within DMR with its own budget, it requires that families who have not yet accessed DMR for services go through an eligibility process specific to the Autism Spectrum Division (this includes families whose children with a Pervasive Developmental Disability (PDD) who have been previously denied services by DMR).

If your child is on the autism spectrum and is already accessing supports through DMR's current children's MR or DD services, you do not have to apply to the Autism Spectrum Division at this time.

In light of these changes, we as a center may need to acquire more information than we currently have in our database. This will most likely be a phone call or a letter to some of you. We are hoping to make a simple and slow transition. If you have any questions, please don't hesitate to give us a call at 508-652-9900.

Update your Bio-Forms!

We all know how important it is for our local first responders to have current information about our children with autism. Well its been over a year now since some of us first provided our local fire and police departments information about our kids using the bio forms provided by the Autism Alliance of MetroWest, Inc. Over a year ago when we began training fire and police about autism, many of you completed a bio form and many of your local fire and police departments received those bio-forms which gave them a terrific base of information about kids with autism.

Now it's time for all of us to update that information. A child changes a lot in a year, not just physically but in many other ways as well. Make sure you download a new bio form from our website at: Just go to the videos section and then download bio forms is on the left. Complete the bio-form the best you can and send it to your local fire and police stations. If you have time visit them in person with your child. These folks are terrific and they will take the time to get to know you and your child if you let them. It's important for both sides to educate each other.

Assistive Technology Comes of Age

It's not often that I feel enthusiastic about a product, and my experience with many high tech toys is that they're only that, toys that don't deliver much in the form of education or therapy. The Kurzweil 3000 has changed my mind. This is one high tech program that can really make a difference.

Errionleah Turner teaches middle school in Douglas, and her students consist of children with a wide variety of disabilities, from a child almost incapacitated by cerebral palsy to one nearly blind. She's the kind of teacher we all want for our children--enthusiastic, innovative, and upbeat. Ms. Turner, who is a former speech therapist and once worked at NECC, feels the program can help those with Asperger's, autism, opposition-defiance, Tourette's, and children with various neurological and processing problems as well as dyslexia. "It's great for anyone. Everyone can benefit from it, including typical kids who are slow readers." Every computer in the middle school has Kurzweil and everything is networked. Lessons can be saved from anywhere and can be accessed anywhere.

On the Kurzweil website (, you can see a demo of the product. It looks like a nice product, and it gives you a very good idea of what it does. But in action, in a real school, that's where you can see the difference this program makes. Ms. Turner is very enthusiastic about it because her children are actually learning. They all love using computers. The blurb on the Kurzweil website states that this product is the "scanning, reading, and writing solution for people with learning disabilities or reading difficulties." Ms. Turner says that the program delivers.

The program is very flexible. Students can pick different voices to read to them, font sizes, and colors. "It individualizes every single thing," Ms. Turner says. The computer reads to you, highlighting words as it reads, or it can simply highlight material to help the child focus on the words as he or she reads. It won't let you skip over words. It can read one word at at time, sentences, or entire paragraphs. The child can check definitions of unfamiliar words and can adjust the speed at which everything is being read or being highlighted.

Books can be scanned into the system, and it can help with writing by helping students through its word prediction capacity. It will give the students options, and the program will read it back to them. Ms. Turner showed me examples from students who would otherwise be struggling. "It makes the playing field even. My kids are more successful on the computer."

For children who can't comprehend the written word and can't go on the Internet as a consequence, the Kurzweil can help by reading material on the internet for them, enabling them to do research, which they can then save. Children who have problems with comprehension can have the same assignment read over and over again to them by the computer, rather than a person. For children who are socially aware, it can be embarrassing to have an adult still read to them. The computer gives them a more socially acceptable form of support. They can sit at the computer with headphones, and no one can tell that they need to go over material a dozen times until they understand it.

"It gives them independence," Ms. Turner says. "It allows children to have access

The Kurzweil isn't limited to reading assignments or the Internet. "You can put anything in it--math, English, social studies. You can get books free from the Internet, like Call of the Wild." Ms. Turner has cut up books and put the pages through the feeder, and the material is then stored on the network for other instructors to use as well. The Kurzweil 3000 can also be used for the MCAS.

"It gives them independence," Ms. Turner says. "It allows children to have access regardless of their problems."

There is a drawback to the Kurzweil, and that's the price. The 3000 program costs $2,695.00 (for Windows and Macs), and in this day of budget cutting, that's not something schools will consider lightly. Kurzweil Educational Systems, Inc. were founded in 1996 and has a long history of producing assistive technology, going back to the Kurzweil Reaching Machine in 1976. This is a local company, situated in Bedford, so they are a fairly well-known company, and they're out in places other than Douglas. This might help a school system look more favorably on such an investment. As a parent of an autistic child who reads well but constantly skips over words and is reluctant to write anything other than bowling scores, it's a product I'll try to get for my son.

"If Douglas can be involved, then other big districts can do it," Ms. Turner says, and I agree. You might bring it to the school's attention the next time you have an IEP. The technology has come a long way from simple readers and is now in a position to make a significant impact.

Man's Best Friend

We have known for a long time that pets bring out the best in us humans. However it has been proven time and time again in nursing homes, prisons and even schools that pets, especially dogs can have a dramatic positive effect on us. NEADS, the National Education for Assistance Dog Services has been in existence since 1976. They provide specially trained service dogs for the hearing impaired; wheelchair bound and even dogs to assist special educators and therapist who work with physically, mentally or emotionally disabled children. Recently Justin Daigle
acquired just such a dog. Heff is a two-year-old "Schnoodle", (half Poodle and half Schnauzer) a specially trained social dog. After completing a weeklong training process with Justin and his mom, Allison, Heff is now part of the Daigle family. Justin if he likes is able to take Heff to the grocery store, library or to his sisters pre-school play. Many people are interested when they see an assistance dog. If you're a dog lover you may even stop that person and ask them about their dog. This is what's happening with Justin and Heff. "People have been more understanding of Justin when Heff is with him" says Allison. They are interested in Heff and then more importantly they are learning about Justin. "Just leaving the grocery store last week two people said good-bye to Justin, now that wouldn't have happened without Heff". Justin has made a wonderful connection with Heff now sharing the end of his bed with him. The Daigle's feel although it's only been a short time Heff has made a significant difference for them. As for the future their expectations are even greater for the social opportunities that Heff may open for Justin. Even their other dog Dexter seems to enjoy the families' new addition.

If you would like more information about service dogs visit the NEADS' website at or you can call 978-422-3255.

Neurofeedback: There may be something to it!
By Anke Kriske

Remember that ubiquitous arcade game, Pac-Man? Versions of it have been reincarnated as a tool for neurofeedback. The brainwaves of children with autism show a pattern that is younger than their chronological age. With neurofeedback, the goal is to help the child's brain reach a more mature state, which will hopefully have an impact on behavior.

Neurofeedback is noninvasive, and if a child likes video games and will watch a computer screen, it's a fun therapy. The games used in neurofeedback tend to be calmer than what's out there now at your local arcade and they move more slowly. The requirements are simple--the child has to be willing to have several electrodes attached to his or her head and an ear and be willing to sit reasonably still and watch a computer screen. The child does nothing other than watch the screen. Everything else is done by the brain. Derek's favorite game, "Space Race," rewards him with diamonds and increasing points, both of which he likes. If the child cannot sit still for the games, then the therapy won't work.

Barbara Scolnick, M.D., is a graduate of Columbia University, board certified in internal medicine and occupational medicine, and the director of the Neurofeedback Group, a nonprofit EEG biofeedback clinic and research center. She does neurofeedback in her home, so it doesn't feel like yet another therapy. For Derek the basketball hoop in the yard that he can use before and after therapy makes it an enjoyable experience. Barbara has been experimenting with neurofeedback for six years now. Her research at the Gifford School with Asperger's children show that neurofeedback makes an impact, and the findings have been good. "Good but not great," she stresses.

Autism Alliance member Mary Lane, whose children, Bernadette and Thomas, have had extensive sessions with Barbara, has had a similar experience. "The year Thomas went, he made improvements in school. It was one of his best years. Bernadette seems calmer after she's had it. It did take a while to see the differences. They don't hit you over the head, but neurofeedback helped with obsessive behavior."

Derek has been undergoing neurofeedback for about four months, and the results have been ambiguous. Changes have not been dramatic, but I have noticed some differences. Probably what impresses Derek the most is that he's now better at playing arcade games to the point where several times he's managed to be among the top ten scores. He's been playing the same games for years, and the results have never been that good before.

Derek doesn't have much in the way of compulsive behaviors, although he did have an extremely annoying fascination for my high heeled shoes and briefcases. He would act out dance routines he saw on TV using my high heels, and sometimes he'd pester me to dance, and I'm sure he was very disappointed that I couldn't duplicate Paula Abdul's tap dancing routines or that my shoes didn't produce sparks. He'd also pester his father to look inside his briefcase, which was inspired by one of his favorite commercials. The shoes and briefcase fixation tends to come and go, but they seem to have disappeared longer than usual. He's also not as interested in watching the same commercials over and over, which would feed his fixation. He still plays with my shoes, but it's more of a game than an obsession.

Derek's largest deficit is language, and he doesn't want to speak in sentences if he can possibly avoid it. He had one memorable exchange with another child also at Barbara's for neurofeedback where Derek calmly and distinctly said his name and age. His usual response is to say "I don't know." After a year of speech therapy and very limited progress, the last few sessions improved quite a bit. Derek long ago mastered the art of squirming, and there have been sessions where he was remarkably still.

How much of this is the direct result of neurofeedback and not the vitamin therapy that I'm also pursuing or simple maturation? That's hard to say, and Barbara is the first to admit this. "More unbiased studies need to be done," Barbara says, "and the process needs to be refined further." After four months, Derek's brainwave shows some changes toward maturity, but not much. Barbara feels that if the equipment and programs can be improved further, more substantial and visible changes will be possible.

Mary and I both have the same impression, that's there's something to neurofeedback that warrants further investigation. From what I've seen and read, neurofeedback helps ADD children calm down and be more focused, and I wouldn't hesitate to recommend it for that. (ADD and ADHD are sometimes considered a very mild end of the autism spectrum.) I had one parent of an Asperger's child tell me she felt that her son received the most improvement from neurofeedback. There is enough evidence that most, but not all, of Asperger children and adults would benefit. For autism, further research needs to be done before neurofeedback can be considered a premier form of therapy, although there is anecdotal evidence that some autistic children have done well with it.

Neurofeedback is not a quick fix. Dr. Lawrence Hirshberg of The NeuroDevelopment Center in Rhode Island, recommends ten to twenty sessions before improvement is seen. In my experience, forty sessions are more reasonable for autism, and the changes are still subtle. Mary also feels that the changes don't last without regular visits. Further research is needed to determine exactly what neurofeedback can and cannot do.

Was the therapy worthwhile? Yes, because it is cutting edge and parents need to be willing to participate in new therapies. So far neurofeedback is a promising therapy that has not yet matured for autism, but I feel it will in time be very promising.

For more information you can contact Dr. Barbara Scolnick at Neurofeedback Group Inc., 11 Irvington St., Waban, MA 02468, 617-964-1807 or Dr. Lawrence Hirshberg at the NeuroDevelpment Center, in Rhode Island at


We found a new tool for children who need a picture system and haven't responded well to Mayor-Johnson.

elliecards™ are a complete set of picture cards intended as an augmentative communication system for young children with special needs. Designed to be used for children with autism, speech disorders, and various learning disabilities, elliecards™ are an invaluable learning tool for parents, therapists and educators.

Created by parents who had little success using other picture card systems on the market, this product uses photos that are realistic to everyday life, come laminated and completely assembled in an easy-to-use binder.

The Early Learning Images product includes a master binder containing 192 separate photos of items - known as elliecards™- commonly used by young children and therapists. Each photo is laminated and affixed to the pages of the binder with hook and loop fasteners (commonly called Velcro®). The binder is organized into categories by plastic color-coded pages. The complete set also includes a "choice board" where a smaller number of the images can be easily mounted and interchanged for travel or training exercises. This highly organized system makes it an easy process for anyone who is familiar with how to exchange images properly, including parents, speech pathologists, occupational therapists, behavioral tutors and physical therapists to name a few, to use this learning tool.

The set of 192 elliecards™ contains a variety of foods, snack reinforcers and toys commonly used by young children and therapists. There are also cards indicating places such as potty, bath and outside as well as a selection of colors.

Each elliecards™ is labeled with the name of the item in the photo. This is done for two reasons. When an exchange is made, all those implementing the elliecards™ can consistently emphasize the same word to the child. This repetition of words aids in language development.

Secondly, as the child sees the elliecards™ over and over, it can be beneficial for that child to also view the letter characters and possibly aid in sight-reading as he or she develops.

Early Learning Images also offers the option of a custom package in the event you require specific pictures not supplied in the original set of elliecards™ . These can be tailored to the specific needs of a child, including specially requested items and photographs of a child's specific home and/or school environment. Please call for more information on your specific interests.

Complete Package: $239 introductory offer
Comes completely assembled and ready to use. Includes binder, 192 laminated images mounted onto 16 color-coded and categorized pages and choice board

Visit their website at

Sensory Learning
By Anke Kriske

You might have caught an article on sensory learning in the Autism/Asperger's Digest issue of March-April 2002. Sensory-Learning was created by Mary Bolles to help her own son and she now has a center in Boulder, Colorado. At three, Jason didn't want to be held, couldn't talk, had poor coordination, and a volatile temper. This method so helped Tracey Hutchinson's son that she opened her own Sensory Learning Center in Danvers.

This program offers help to a variety of disabilities, ranging from autism and acquired brain injury to dyslexia and stroke. In the case of Ms. Hutchinson, her son has tuberous sclerosis, which can cause autistic symptoms in some cases. Her son, Ben, participated in the Sensory Learning program during the holidays in 2003. "We didn't see much in the first thirty days. Six months later we could say this is a different child," Ms. Hutchinson says. Sensory Learning is a thirty-day program. It uses light, sound, and motion simultaneously to stimulate the visual, vestibular, and auditory systems, forcing them to work together more efficiently because they become more organized. The idea is to challenge the system and not allow it to shut down, forcing a reorganization.

I used my son, Derek, as a guinea pig, and let him try it. At fifteen, Derek is an independent teenager, and he has no interest in humoring mom. He laid on what to him was simply a large bed. He wasn't concerned when it started to move up and down and enjoyed the light show and the music in his headphones. Sensory input is controlled by computer--this is definitely a high tech approach to autism-- but since it is noninvasive, he didn't have any problems with it.

He visibly relaxed during the ride, at least until he started to get bored. Derek is usually bored quickly with any therapy. "All done" is one of his favorite expression, but he had no problems lying still for about half an hour-a record for him. The program is done in the dark, so not all children take to it as easily as Derek did.

I spoke with Mary Bolles when she visited Massachusetts. Ms. Bolles feels that there is a glitch in sensory processing that throws off development. The stream of sensory consciousness is messy, and when it comes to pulling it all together, children with autism can't do it. As a consequence, they can't relate to the environment in a neural-typical way. With therapy, "They start to connect. They start to become present."

She's worked with all age ranges, from as young as two years to as old as ninety-one, a man who had had a stroke. These days most of the kids she sees have autism. The second largest category is brain injury.

One of the benefits of this therapy is that it helps with anxiety. "Change the sensory, and you change their world, and that changes their behavior," she says. Some of the children who have gone through her program has done so much better that they have gotten off medication. Her own son, Jason, is doing very well. He now has a master's degree.

The program is intensive, requiring twelve days of visits to the office followed by eighteen consecutive days of work at home. The program is expensive. The total fee is $3,500, although insurance may reimburse a portion of the coast.

To learn more about the program, visit the website: or call Ms. Hutchinson at 978-762-4400.



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