AANE News
Issue 18 - Spring 2006

A Model for Joint Parent Advocacy

By Carole Slipowitz

In recent years, parents of children with autism spectrum disorders (ASDs) in several towns have organized into advocacy groups, in order to persuade our local school systems to pay more attention to our children’s needs. This article describes the strategies and successes of the Network of Newton Autism Parents (NoNAP), of which I am an active member. NoNAP has existed for over two years. As a group, we parent over 70 children on the autism spectrum, and our membership is growing all the time!

In creating NoNAP, we have come to recognize the importance of respect and confidentiality. We are a diverse group. Some of us have children who usually “pass” as neurotypical, while some of us have no choice but to be “out” as parents of a child with special needs, since our children visibly “stim” or have little speech. Some of us want more pull-out services in a quiet, distraction-free space; some of us have children who would be terribly embarrassed if they had to leave their classrooms for services. At times subgroups of parents whose kids have similar needs work together on projects to address those needs; as the result of efforts by NoNAP parents, next year one school will have an integrated, co-taught kindergarten class including a cluster of ASD children.

Our group is open only to parents or guardians of children with ASD who either live in Newton (including those in out of district placements), or attend a Newton public school. Before joining, members are asked to sign a statement agreeing to keep confidential the names of other group members and their children.

NoNAP is an independent organization of parents, separate from our school district’s Special Education PAC (Parent Advisory Council). School districts are mandated by law to establish PACs. PACs include parents of children with all kinds of special needs. Their meetings are held in school buildings, and are open to school administrators. Most NoNAP members also belong to the Newton PAC. However, as parents of children on the autism spectrum (ranging from Asperger’s to classical autism), we have found that it’s useful to have private meeting times and spaces. To enhance communication, we have also established our own e-mail group through www.yahoogroups.com.

Newton is an inclusion-oriented school system in which it is typical to have only one ASD child per classroom, so we parents are unlikely to meet each other through classroom activities. Yet parents of children with ASDs are usually hungry to share stories, and to understand what services our school districts offer. Many of us have learned the hard way that if we don’t know to ask for a service for our child (or for a change in quantity or quality), it may not happen. For example: Because Newton is an especially big district, a staff member at one of its 22 schools doesn’t always know when a new program is being used at a different school. Questions we might answer for each other at NoNAP meetings include:

• “Is your child in a social pragmatics group?”
• “Who in the district is skilled in doing functional behavioral assessments?”
• “How did you get your child’s aide to understand what s/he needs on the playground?”
• “Who really ‘gets’ our kids, and can give input that will be listened to by team members?”

Our group has sponsored speakers Stephen Shore of AANE, and Dr. Lauren Weeks (speaking on Relationship Development Intervention). We have helped Newton secure funding from the Massachusetts Department of Education for an Autism Specialist. We also participated in the interviewing and hiring of Scott McLeod and Dot Lucci of MGH YouthCare as consultants. They are now surveying parents, staff members, and administrators about Newton’s current educational practices, services, and programs for children on the autism spectrum, including issues of school staff/parent communication.

One of NoNAP’s first acts was to approach the Superintendent of Schools when Newton was advertising for a new Special Education Director. We communicated our particular concerns and suggested interview questions. Since the arrival of the new SPED Director, Margie Daniels, our group has maintained strong communication with her. Each month, we organize a larger meeting on a particular topic, such as social pragmatics programming, human resources/hiring issues, or services for children of particular ages. The larger meeting is typically attended by Ms. Daniels, the school staff members who are most involved with the topic, Newton’s Autism Specialist, and one or both of the YouthCare consultants.

Over time, groups like ours can come to be perceived as allies to special education departments. We can write letters in support of a school district’s grant application, publicly testify as to why proposed cuts in special education will be detrimental, and even co-write grant applications with district staff. Many towns have non-profit school or education foundations that take private donations from residents to fund programs that are not in the public school budget. Last year NoNAP members collaborated with Newton staff and successfully appealed to the Newton Schools Foundation for $5,000 for staff training on how to do effective social facilitation.

NoNAP has had a positive impact on many families and schools. By meeting, parents often learn that what we thought were our own unique problems are experienced by many others—and we can solve them together. When we approach the school system as a group, we increase the chances that educators will address our concerns. Sometimes parents fear that “making waves” will cause them to be disliked, and even decrease a school’s good will towards their children. My own experience in Newton is that, as parents continue not just to highlight problems, but to present ideas, concrete assistance and solutions, school administrators are responding positively.

Carole Slipowitz is a psychologist in private practice in Newton and Wellesley. She works with college students and adults, including parents of children on the autism spectrum. For more information on the NoNAP model, or information about NSNAP (a similar group in Needham), please e-mail Stephanie at aane.associate@rcn.com.

Sensory Processing & the Sensory Budget

by Alex Michaels

How do we know anything at all about the world? Our sensory system is responsible for accurately taking in information so our brain can interpret this information and then do something with it. For everyone, this process happens instantaneously and continuously throughout the day: “I see red, I see round, I hear bouncing, I smell plastic…it’s a ball.” In essence, our sensory system is the first line of information interpretation. In order to interpret information correctly, we must perceive it accurately.

But what if your sensory system short-circuited somewhere in the process–what would happen to this information? Imagine if a miniscule piece of information, such as color, texture, or smell, was incorrectly interpreted. For example:

Until I was about 27 years old, I hated wearing pants. The texture irritated me. Jeans felt like razors on my legs, and pants felt slimy. It was as if something was grabbing me all day long. On top of wearing these pants, I was supposed to be concentrating in school and acting nice to people–what were they thinking?! The sensation of pants or jeans would highjack my sensory system, and I would become progressively disregulated, ultimately leading to a meltdown. When I was a child, as a coping skill, I started wearing tights that were too small under my pants. This provided me with deep pressure and a barricade between my legs and my pants, allowing me to last longer during the day.

Another example: As a child I would only eat meat and plain tan/white food (bread, crackers, potatoes, etc.). Prior to eating my meat I would need to wash it to minimize the flavor. When meat is washed it all tastes the same, so there was no element of anxiety-provoking surprise!

Now multiply the above experiences by dozens of events each day—and then multiply again by each one of your senses: touch, taste, smell, sight, sound, movement, and position in space. What happens to your world now? When you’re about to sit in a chair, how do you know when to shift your weight from your legs to your buttocks so you don’t fall? How do you know not to touch a hot stove? How do you know if you’re hungry? When driving through a small tunnel, how do you know you don’t need to be anxious, because your car won’t smash into the bottom of the arch?

Your sensory system is constantly providing you with feedback to help you make good decisions throughout the day—but if you are a person with Asperger Syndrome, you may be unusually sensitive—or relatively insensitive—to various stimuli. This may lead you to over-react or under-react, and will probably lead to discomfort, confusion, and anxiety. If you perceive the stimuli in a “neutral” situation (e.g. walking down a school hallway) as threatening (heightened noises, overwhelming smells, disorganization, etc.), your body will interpret the sensory information as dangerous, threatening, and anxiety-provoking. With this type of faulty sensory system, it is virtually inconceivable that people with sensory disregulation can master the environment and navigate their days calmly unless they receive support.

In the book, Sensory Integration: Theory and Practice (by Anita C. Bundy, Shelly J. Lane, Anne G. Fisher, and Elizabeth A. Murray) the authors quote this definition by A. Jean Ayres, the pioneer of sensory integration:

“[Sensory integration is] the neurological process that organizes sensation from one’s own body and from the environment and makes it possible to use the body effectively within the environment. The spatial and temporal aspects of inputs from different sensory modalities are interpreted, associated, and unified. Sensory integration is information processing… [T]he brain must select, enhance, inhibit, compare, and associate the sensory information in a flexible, constantly changing pattern; in other words, the brain must integrate it.” (p. 11)

Sensory processing can be broken down into:

Internal: processing what’s going on inside your body, such as temperature, respiration, arousal, circadian “sleep” rhythms, pressure and pain.

External: processing information from outside your body, such as smells, tastes, feeling things (texture, temperature), sounds, and the appearance of objects.

It has been relatively easy for me to develop coping skills to process or escape from external stimuli. For example, when I hear a painful siren, I can immediately cover my ears. When I am flooded with internal stimuli, however, I can’t escape; I just have to ride out the wave and pray it doesn’t drag me under!

Processing internal stimuli is much more disturbing and disorienting than external processing. Inside myself I feel a change, but have extreme difficulty accurately interpreting what the change is. For example, when I was younger and felt hungry, thirsty, hot, cold, tired, excited, angry, bored, frustrated, anxious, or needed to go to the bathroom, all my internal sensations registered as the same signal. I knew something had changed, but I didn’t know what the “something” was—all I knew was that it felt like I was trapped inside a burning building. I didn’t know what I needed to do to fix the problem. By the time I figured out what my body was trying to tell me, it was often too late. By then, a tidal wave of sensation had begun: I was exhausted, starving, really needed to pee; a small emotion had escalated into anger or frustration; anxiety was now intense and pervasive.

For most people with AS, sensory issues lessen in intensity over time—but they do not vanish. As an adult, I still have to work hard at reading my own internal signals and regulating myself. Years ago, I realized I had to developed a system to prevent both internal and external sensory overload. I did develop a system that works: it’s called a sensory budget.

Sensory Budget

If you keep filling a water balloon, it will eventually it will burst—and it’s the same for your sensory system! To manage my own sensory environment and modulate my own sensory system, I created a budget. I outlined all activities that I engaged in, and assigned a numerical value to each one. Some activities eat up only a few points. For example: eating a non-offensive food like bread = 1 point. Social interactions = from 4 up to 26 points, depending upon the topic of conversation, the familiarity of the people, and the location where the interaction occurs. Each day I start with a budget of 100 sensory points, knowing I must live within my budget in order to remain stable and not melt down. Every activity, from getting out of bed in the morning to attending a concert in the evening “eats” sensory points—and this is true even if an activity is pleasurable or fun. Surprises or unexpected events tend to eat away at my budget, because anxiety, unpredictability, and needing to be flexible are high point eaters!

Once I’m getting close to using 100 points, I need to end my day by going to sleep or retreating—unless I can find a way to neutralize some of my points. Just as exercise neutralizes caloric intake, certain activities can replenish or neutralize sensory points by evoking the “relaxation response.” I call these neutralizing activities “sensory preventions.” They differ for each person, and may involve increasing or decreasing stimuli. The only way I have found to keep myself regulated and stable is to prophylactically (preventively) partake of sensory preventions multiple times each and every day.

Sensory Preventions

If you are raising or working with a child with Asperger Syndrome, it is vital to apply these preventions prior to the child becoming overstimulated (using up too many points) and disregulated. Once the child is disregulated, the anxiety response is ignited. Then it takes significantly more interventions for the child to return to a neutral state—not to mention it’s kind of cruel and inhumane to the child. The added anxiety stemming from disregulation itself can further disregulate the person, leading to a negative, self-perpetuating cycle: “I get overstimulated which leads to anxiety which leads to further disregulation which leads to further anxiety, etc.”

Preventions or interventions are most useful if the child can take them along wherever s/he goes. Since one never knows when or where sensory overload may occur, relying on specialized equipment to facilitate the relaxation response can sometimes be counterproductive. As a child, when I would get upset I used our swing set to calm down. However, when I became upset during the wintertime or in the middle of math class, the swing was not an effective intervention! Therefore, having “pocket interventions” is helpful.

Sensory Activities

When seeking appropriate sensory activities, it is important to think in terms of each sense individually, and whether the person needs to increase input (to stimulate) or to decrease input (to calm). See the chart below for examples of regulating activities that may help certain children.

I hope this article will help adults with AS create your own sensory budgets, identify your own sensory preventions, and use them as tools for living more comfortably and successfully. Parents, teachers, and therapists can work with children to create sensory budgets and identify preventions. It will also be helpful to use the chart below to adapt the basic home and school environment—and plan the child’s schedule—to meet the child’s sensory integration needs.

Alex Michaels is the Executive Director of Educational Consultants of New England, Inc. in Waltham, MA. They run Camp Goodtimes and the School for Accelerated Learning, and offer social pragmatic groups and educational consultations. See www.StopThatBehavior.com.

Call AANE for other helpful resources, such as books, or names of Occupational Therapists.

Asperger's and Depression:
Inside a Common Paradox

By Nomi Kaim

A large proportion of people with Asperger’s Syndrome–perhaps especially those who are higher functioning–suffer from some form of depression. It is unclear whether this depression emerges as a result of the struggles, exhaustion, rejection and failures so often present in a life with Asperger’s Syndrome, or whether the mysterious neurology of AS somehow invites, or includes, a hard-wired affective disorder. What is clear is that people with Asperger’s Syndrome can end up particularly entrenched in their depression, and be difficult to treat or “cure.” Like many of the viewpoints and needs of individuals with Asperger’s Syndrome, this depression can be extremely rigid and hard to budge. To use the sensory terminology of Autism Spectrum Disorder: the “weighted blanket” of despair is immobilizing, smothering, paralyzing–and it most certainly does not provide deep pressure relief!

My own personal struggles with Asperger’s Syndrome and depression have also revealed some seeming paradoxes in the juxtaposition of these two conditions. It seems that many of the thoughts, feelings and impulses associated with depression are practically incompatible with the definitive mindset of Asperger’s Syndrome. Depression arouses desires that the person with AS does not need or want–and vice versa. And yet the conditions do coexist, and often; so I, like many with AS, am forced to live the paradox.

Below are some of the contradictory forces I find myself battling daily.