Schooling is one of the most problematic areas for children with autism. Although the rates of autism have skyrocketed, schools have been unable to keep up. And this is not an issue isolated to the United States. A 2000 study of schools in Wales and Scotland, published by Judith Barnard and colleagues at the National Autistic Society, found that these countries’ teachers and schools were woefully underprepared for the numbers of students with autism. Such issues of underpreparedness of teachers are clearly present in the United States as well. And yet, we turn over our children to other people that we trust to love our children, implement the best therapies, listen to us, make accommodations for our children, develop their abilities, and to tell us how things are going. Trusting educators is a process, and the more that you know, the better able you will be to facilitate the communication.
Let me be very clear: Montessori education is not set up for kids with severe disabilities. They do not ever claim to be an effective intervention, and often do not have special services for children with autism, high-functioning or not. However, originally created for the “lost children” of poverty and neglect, Montessori education follows the child in her own developmental growth. This means that it allows children to progress at their own rate, with a system based on the concept that children will watch first, then try and then master. For my child who was bright, not talking, and watched people before interacting with them, I decided that Montessori education was the perfect thing for her. And it was. I credit our Montessori school with so much of her progress.
To begin with, Montessorians do not ever lock a child into a particular academic or social expectation and the needs of each child are looked at from an individual perspective. Knowing that Elizabeth had language problems when she turned 2, I immediately enrolled her in our local Montessori Toddler program, designed for children aged 18 months to 3 years old. I wanted her around typical children because she watched other children so intensely. I also wanted her in an environment that would not pressure her to join the group, but allow her to watch and try new tasks at her own rate. And lastly, their program is so tactile and hands-on in nature that I knew it would be a great way to gently acclimate her to sensory things. By learning to polish shoes, for example, she would be learning how to handle slippery things.
When she was 2 1/2, the teacher of the Infant/Toddler program suggested to me that she be moved up into the Early Childhood classroom for children who were ages 3–5. She was not doing the tasks of that age but as they said to me, and I am eternally grateful to them for this, “She needs to be surrounded by language, and the kids in that age group have higher language levels than the toddlers.” I did not suggest this movement, and was amazed that her teachers would suggest something that was outside the “rules” to meet the needs of my child. This truly was an outstanding school that looked at each child as an individual and focused on meeting those needs. It’s an ideal you rarely see.
It was one we paid for, though. Montessori schools, especially private ones, tend to be expensive, but I know that teaching her to talk and be social was worth every penny of it. My daughter is now two grade levels ahead in reading and three in math, and I credit the individual approach her teachers took in her educational process to this gain.
It is worthwhile noting that the word “Montessori” is in the public domain, which means that any school can call itself a “Montessori school” regardless of teacher training or beliefs. I would encourage parents, if Montessori education looks appealing, to make sure that the school is accredited by either one of the Montessori accrediting agencies and that the teachers have received Montessori training from a Montessori-accredited teacher preparation program. Such training and accreditations are more likely to ensure that the school is committed to accepting individual differences and to developing the abilities of its students.
There are a whole host of private schools that specialize, and claim to specialize, in working with children with autism. There are 800,000 sites that describe private placement and autism on Google, so there certainly are a large number of choices. Good ones, however, are more difficult to find.
Private schools, in general, are under no legal obligation to educate children with autism. If your child has a label, no matter how high functioning he or she is, private schools have the right to deny you services, based on the premise that they cannot meet the diverse needs of your child. However, labels are not public knowledge. But you do need to think before you enroll your child in a program without disclosing his issues. A friend of mine works in a private school and shares how parents try to “sneak” their children in. It almost always backfires, particularly when the child is having a meltdown or a bad day. Difference looks different, and teachers are experts at knowing what level of difference their school can tolerate. I found that it was better to describe Elizabeth’s symptoms, but steer away from the label that has so much baggage associated with it. I brought in IQ and achievement test scores to back up my claim that she was “very smart but learned differently,” and noted that she had sensory issues and that while her language is strong, teachers have to give her time to respond. I relied on her testing data to communicate with teachers, not the label. Private schools are a mixed bag—they can be very, very good, or very, very bad.
There are other private schools that specialize in children with disabilities, but most of them do not accept children with autism, and often are significantly confused about children with high-functioning autism. They tend to be designed for children with typical social skills, but poor reading skills. Autism is perceived as such a high-needs area and so specialized that most private schools are not willing to take on the behavioral and learning needs of children whose needs are literally all over the spectrum. The perception among educators is that children with autism are harder to teach, and that generalization may or may not be applicable to an individual child.
Lastly, there are private schools who accept only children with autism. And here is one of the biggest dilemmas parents face. Because they only take children with autism, there will be only children with autism for your child to be around. Similarly, these schools are used to a population that often is severely cognitively impaired. There will be few role models, but there should be a staff who is caring and understands the complexi ties of autism and who are more likely to communicate and work with you. Such skilled expertise can be expensive. Schools can commonly be $50,000 a year and upward. And public schools generally are unwilling to pay the cost of private school placement because these are the most restrictive placements possible.
Children who do best in these placements tend to have either such severe autism that the impact of peers is negligible, or they have faced such extreme teasing and abuse in a more inclusive setting that they’re deeply unhappy. In a school for children with autism, everyone understands autism and the child is more able to be his own person, free from the expectations of the label.
Another issue in private school settings is that there tends to be tremendous turnover rate among staff. Most private schools do not pay teachers what public schools can. Teachers at private schools often are there to get their first years of teaching down, and then are drawn away by the public system, or have retired from the public system and are supplementing their income until they “really” retire. Because stability and routine are so important to children with autism, losing a favorite teacher can be truly traumatic. Also, the effectiveness of the interventions may be based on the training of the individual teacher.
Perhaps one of your better options, if your child is strong enough to compete academically, is a private school for children with gifts and talents. They are used to children having diverse academic abilities, and many of their children have social challenges as well, so they are well-prepared to work with children with diverse needs. However, instruction and interaction in a school for gifted children tends to be highly auditory and language-based. Most children who attend a school for gifted children are very fluent in language and make jokes and puns that may be beyond your child’s abilities. In addition, your child’s visual needs or language challenges may not be appropriately met here. You will need to balance many factors when considering schooling.
If you are checking out private school options, be sure to ask some of the following questions:
You should have an idea of what answers you want to hear from them. You will rarely, if ever, get all of the right answers from the same place. The goal is optimization—the highest number of the best answers from one place. There may be a place that does one thing exactly the way you like it. Weigh that in consideration with the other issues and make the best determination you can.
And be prepared to change. Schools can say one thing, and do something completely different. I knew a school that had the greatest person selling the school. She verbalized exactly what we were looking for, seemed to be in alignment with my philosophy, and I sent my children off, content that they were being taken care of and cared for. In reality, the principal had little follow through and poor communication with her staff. My children had a great teacher, but when she left, we left.
For parents who cannot find a system that works for them, or who perceive that no one else has the specific knowledge of what works for their child, homeschooling is an option that is growing rapidly in popularity. There is a significant financial element because it generally requires the full-time involvement of at least one parent, as well as training costs for the parent who is providing the educational interventions. Hidden costs come in as well as you provide social engagement opportunities for your child. Camps and sports activities where children can meet and engage with other children cost money because they aren’t provided through the school. It also can put stress on a marriage when one parent is providing direct treatment, and the other is not.
However, the education is absolutely tailor-made to your child. If your child is obsessed with cars, then math, reading, and history instruction all can focus around cars. If the child has an attentional issue one day, you can back off. If he’s interested in one thing all day, you can adapt to that as well. The parent understands what can motivate and move a child forward. Also, because homeschooling is such a growing movement, there are thousands of websites dedicated to curriculum and activities for children that the parent can access. Also, most larger communities will offer social activities and connections to other homeschooling parents. Our local sports facility offers homeschool swim classes during the day for families to interact with each other, and local museums will offer field trip opportunities for homeschooling families.
Each state will have different requirements for the homeschooling process. Some of them will require extensive daily logs, testing, and portfolios. Others will require that you check in every now and then. Research the laws, and join your state’s homeschool organization to advocate for needed changes. When done poorly, homeschooled children can suffer significant neglect. However, when done well, homeschooling can be a fantastic experience for the child and the parent.
As I have mentioned before, I was thrilled with the intensive therapy provided by Early Intervention. I cannot say the same for the services from the public schools once Elizabeth turned 3. At 3, she moved from EI to special education within our local school district. I was so annoyed that the group who had gotten to know her so well would be cast off and there would be no follow-up possible.
At her Individualized Education Program (IEP) meeting, we went over goals: Yes, Elizabeth would be using age-level language skills. Yes, she would be interacting with other children to learn how to ask for things. All good. Then, they turned to me and said, “We have two options for services. The first is a full-day self-contained program for children with autism and the second is a part-time self-contained program for children with autism.” I was livid!
Elizabeth, then and now, is a mimic of behavior. She tries so hard to figure out the code of social acceptance that she will watch everyone around her and act in that manner. If things were calm, Elizabeth was calm. If things were chaotic, Elizabeth was in the middle of it. The last thing my mimic daughter needed was to be in a self-contained classroom of other children with autistic behaviors. Hers would only get worse! She had been in a Montessori classroom with typical peers and had been doing very well.
“Can’t she get services that were deemed to be necessary and appropriate just a week before?” Well, no, sorry. The school system didn’t offer that. Sometimes, they did have kids from neighboring preschools come and play with the kids in a structured environment. This, this was inclusion?
“What about the therapy?”
“Well, that’s in a group setting.”
Soooo, let me get this straight. She’s moving from personalized, individualized, one-on-one services that come to her school to a self-contained program with group therapy and I’m supposed to be OK with this?
Special education is caught in a bind of what is called “free appropriate public education,” commonly known as FAPE. “Free” is what it sounds like: Services are to be provided at no cost to families so that money does not play a role in a family’s decision. The sticky part is the “appropriate” part. The 1982 Supreme Court case Board of Education of the Hendrick Hudson Central School District v. Rowley clarified that appropriate does not mean “best” or “maximizing.” It means “appropriate for growth to happen.”
What this means for children with high-functioning autism is that schools are required to serve the disability, but are not required to serve the child’s strengths. If a child is managing to function at grade level, even though his abilities may be higher, or there is a significant struggle to do so, no services are federally mandated. In the states that provide gifted education services by state law, advanced services have to be provided for children who are outperforming their peers, but not necessarily for children who have the potential for high performance but aren’t achieving to that potential because of a disabling condition.
In our case, I had not a legal leg to stand on if I were unhappy with what they had to offer. Now, in some egregious cases, parents have taken their school districts to court to provide better services for their child and won. That option was not available to us.
I was in a unique situation. The degrees I hold meant that I was treated very, very carefully. I was particularly irritated one day when they set up a meeting close to the time Elizabeth was to turn 3. I assumed that it was a planning meeting to go over options for her treatment. I had to find a babysitter willing to work with my two active and sensitive little ones, plan around my teaching schedule, and go down to the school district’s central offices. At this meeting, I was told that that purpose of the meeting was to let me know that a planning meeting would be necessary because Elizabeth was turning 3, and we would no longer be served under Early Intervention, something I had already been told clearly by both the therapists and the Early Intervention people (I also had signed a paper stating that I was aware of these changes). I was so angry that they would waste my time and money scheduling a meeting whose only purpose was to schedule another meeting. But they had to make very sure that they covered themselves legally with me. Because I knew the law (heck, I taught the class!), they were very careful with me. I’m not saying that they weren’t this careful with everyone, but I did not feel the gentle helpfulness I had felt with the Early Intervention folks. There was nothing I felt I could do with the school system. I opted out and we decided to go it alone for the next 5 years. Which cost more money ...
I know that other school districts are not so limited in their choices. There has been so much publicity since then and there have been so many more advances made that many school districts now offer a wide range of services that are appropriate for the diversity found among kids with autism. With the expansion of Early Intervention to age 6, those wonderful services we had now can last for much longer than we were limited to. I can completely understand the dilemma of school districts trying to serve preschool-aged children with disabilities especially when they did not have access to children without disabilities of the same age to create a typical inclusion setting. Elizabeth was just 1 year too old.
There are other systems that are doing amazing things with autism. Pleasant Grove Elementary, a public school in Indianapolis, IN, has a “wiggle room” in which kids with autism can retreat when they are feeling overwhelmed and need a break before they have an outburst. The CHIME Charter School in Woodland Hills, CA, specializes in inclusive education for children, starting with preschool and going through middle school. There are a number of excellent private schools for children with autism that focus on one type of therapy or another. However, where we lived, none of these were options.
The following is a synopsis of special education. For more information, please go the National Dissemination Center for Children with Disabilities (http://www.nichcy.org), Wrightslaw (http://www.wrightslaw.com), or the Office of Special Education and Rehabilitative Services through the U.S. Department of Education (http://www.ed.gov/about/offices/list/osers/osep/index.html) websites.
Public education is free—all of it. If specialized programs, equipment, technology, and services, including people to individually assist your child, are deemed necessary to help your child, all of it is free to you. However, it is important to realize when you are working with the school system that they have to operate under significant financial constraints, and all of their dealings with you will take that into consideration, even though legally, they’re not supposed to. Susan Senator (2005) referred to it as the business model of education—not a bad metaphor.
Special education in the public schools is required by federal law, known as the Individuals with Disabilities Education Improvement Act, commonly called IDEA. It is reauthorized by Congress and significant changes are made to it every 7 years. The last version was conducted in 2004, so it’s called IDEA 2004. About 1/3, or 33% of the federal education budget is taken up with special education. Because approximately 10%–20% of students in schools are in special education, there is an unequal distribution; it is clear that it is more expensive to educate children with disabilities.
However, all of this federal money only pays for approximately 8% of the actual cost of special education borne by a school district, according to the U.S. Department of Education (2005). The remaining 92% of the monies have to come from the state and the district—most often from the district. IDEA is very close to an unfunded mandate from the federal government: Districts are required to follow very specific procedures and provide specific services, and yet they are given very little money to do so by the federal government. In cases where districts have claimed that they are unable to provide such services because of their economic woes, the Supreme Court has told them that they must—and they must simply take the costs from other operating expenses. Thus, it is in the interest of school systems to keep their special education costs under control, but provide enough services that students benefit.
There is a legal definition of the word “benefit” as well: The education for any one child has to provide a setting in which it is expected that that child will make progress. It is not required that the educational experience be maximized for optimal growth of that child, nor purely for social reasons. This means that school districts are always trying to balance what is a “good enough” education for a child and the desires of the parents. When I teach the special education law class, I tell my students that special education has been shaped by court cases, and that while individuals may want to do the best for children, the system has to maximize its public tax dollars for all children. Thus, there is an inherent tension built in between the needs of the school district to provide adequate education for all of their children with the budget that they have and the needs of the parents to have excellent educational opportunities for their child.
This doesn’t necessarily mean that the process has to be overtly adversarial, though. Districts and parents are not automatically on opposite sides; in fact, they do have the same goal—to educate the child in the best manner possible and to help her grow. It’s just that the word “possible” means different things depending on which side of the table you’re sitting on.
All public schools are required to serve all of their students, so special education is designed to work with students who (a) have a disability, and (b) have some form of school problem that only a change in instruction would address. If there is an adverse effect on educational achievement, but a change in the accessibility to the instruction would address it, students may have a disability, but not qualify for special education.
If this is the case, but they still need some accommodations or modifications in order to perform well in school, parents have the right to ask for a 504 Plan. Section 504 is part of the Rehabilitation Act of 1973 that requires employers to provide equal access to their employees in order to do their jobs; they cannot discriminate, based on the employee’s disability and the employer’s requirement to provide access. For example, if your office is on the second floor, you are not allowed to deny a person in a wheelchair a job if he is capable of doing the job once he has access to the office. The employer has to provide ramps or elevators or some form of access. If you think of children with disabilities as employees, they have the right to access the traditional school curriculum and not have their disability get in the way of that access. Schools have to make accommodations. A 504 Plan is where the school, the parents, and sometimes the child plan what kinds of accommodations are needed to access the regular curriculum. Students on a 504 Plan do not need specialized instruction, but they may need more frequent breaks, or opportunity to move around more, or even special equipment. My children, because they are on grade level for their academic work, but might need accommodations in order to remain there, would be served under a 504 Plan.
A 504 Plan protects both the district and the child. An individual, fabulous teacher might make some classroom accommodations for a child—allowing him to get up out of his seat or giving him extended time for projects and tests. But if the child moves to a teacher the next year who is more inflexible, a 504 Plan will require that teacher to make specific changes to her classroom. She does not have to change the curriculum, but she will be required to change how she instructs, based on the specific needs of the child. And the district is protected by a 504 Plan, because it documents that it is not discriminating against a child with a disability while providing access to the curriculum. There are fewer parental rights under a 504 Plan than there are under an IEP. However, parents do have the right to call a 504 Plan meeting at any time to review its effectiveness, request additional assessments, and so forth.
If a child qualifies for a disability, and it is determined that she needs particular services in order to progress, an IEP will be written. An IEP spells out what the educational plan is for that child, based upon her strengths and areas of challenge. They are not supposed to be “cookie cutter” plans in which every child in a classroom is working on the same goal. They are supposed to be specific to the child and followed by every teacher and professional within that school. It is a document full of legal protections for the child and the parents that specific steps will be followed, or there will be legal repercussions.
Such repercussions are rare. Although the IEP process often is based upon an adversarial relationship, rather than a collaborative one, the implementation of the plan requires collaboration efforts in which both schools and parents must engage. It is in the best interests of everyone to collaborate and work together to create a positive educational experience for a child.
Getting to an IEP often is a long and frustrating process firmly established by federal law. However, there are small, but significant differences between states and districts in the way they translate the law. You will need to check out the specific processes for your individual state. Essentially, there are seven steps:
Rights Under IDEA
There are several basic assumptions that IDEA is founded on. These all translate into specific parental rights. These include:
• Free requires that the education of each child with a disability be provided at public expense and at no cost to the child’s parents. The only exception is that incidental fees normally charged to nondisabled students or their parents as part of the regular education program also may be charged to students with disabilities and their parents.
• Appropriate means that each child with a disability is entitled to an education that is appropriate for his or her needs. Appropriate education is determined on an individual basis and may not be the same for each child with a disability.
• Public refers to the public school system. Children with disabilities, regardless of the nature or severity of their disabilities, have the same right to attend public schools as their nondisabled peers. The public school system must educate students with disabilities, respond to their individual needs, and help them plan for their future. Private schools are not held to the same requirements to provide services as the public schools.
• IDEA is an education act that guarantees that eligible children with disabilities will receive a public education that includes special education and related services as directed by the child’s IEP, based on the child’s individual needs. (para. 3)
Before you go into any official meeting, it helps to know what you have the right to ask. For more complete lists of parent rights, please go to your state’s special education regulations, or http://www.wrightslaw.com. The website has an excellent description of the various laws and application to parents. You have the right to:
The IEP is made up of several interrelated and significant parts. These include:
• Antecedent: under what circumstances?: “Given a third-grade-level book SWBAT (Student Will Be Able To) ...”
• Behavior: the verb involved: “Describe”
• Condition: what it is that the child is working with: “the plot of the story”
• Determinant: the degree to which he should master the skill or behavior and how it is to be measured: “at a Proficient level, as determined by the classroom teacher.” Some examples include:
• In the classroom, Elizabeth will be able to maintain eye contact with her teacher and familiar peers 50% of the time, as based on observations by the school psychologist.
• On the playground, Ray will be able to play with one or two age peers for a period of 15 minutes with sustained attention, as determined by classroom teacher observation.
• Given a math test, Brandon will be able to multiply two digit numbers with carrying, 90% of the time, as determined by classroom work.
What is notable because it is missing are the specifications of educational approaches or therapies. Rarely do IEPs tell teachers and therapists how to do their jobs; they just specify what they are to have accomplished at the end of it. It assumes that teachers are professional enough to be able to select the most effective instructional approach and do not require additional teacher training. However, if you have a particular therapy program that you have been using that has been successful, you can request that it be put into the IEP. You may not get very far with that, and there is no legal right given to you to require it, but you certainly can ask. It can be very confusing to a child to switch from one therapy program one year to a different one the next year, so you should emphasize the educational, behavioral, and social impact of such changes.
Realize that an IEP meeting is a negotiation. It is in everyone’s best interest to collaborate and provide a plan for your child’s educational experience that helps the child. There are a number of things that you can do to help facilitate this process.
Attitudes
Believe that the teachers and administrators involved ultimately have your child’s best interests at heart also. They may have different rules and different expectations, but they are in the profession of helping children.
Recognize different areas of expertise. You are the expert for your child and you will have a better idea than anyone about what might and might not work for your child. However, the professionals involved have been trained in disabilities and may have expertise in a process of education that you do not. The IEP meeting is an excellent way to match your child’s needs with the variety of strategies that the district can offer. You both can learn from each other.
Be prepared to be very firm on some things and to allow the education professionals some leeway as well. Be ready to give in and to insist. Also be prepared for “happy talk” that says very little. “Elizabeth is delightful” makes everyone feel good, but it is not useful in order to write a goal. “Elizabeth should be provided puzzles in order to strengthen her spatial abilities” is more specific and practical.
Relatedly, be ready to insist on the school addressing your child’s strengths as well. An IEP meeting is designed to meet the needs of the whole child, which can include areas of strength. These strengths just have to be documented and stated in the PLOP. Most people tend to focus on the “can’ts,” but the IEP also should focus on the “cans.”
Also be prepared for private matters to be discussed. Your child’s potty training history, who lives with you, and the relationship you might have with your child’s father (or mother) are all relevant information to your child’s educational progress.
Before the Meeting
Be prepared. Come early, and have all of your child’s documentation. Plan through what you would like to see happen at the IEP meeting. Familiarize yourself with the format of the IEP form so that you can more easily discuss it. Have some draft goals you might like to see happen.
You also should familiarize yourself with your child’s testing and evaluation data before the meeting. You have the right to see it ahead of time, so consider requesting this well in advance of the meeting. It can be beneficial to ask if you can meet your child’s teachers and therapists ahead of time, and you should visit the new school or classroom if possible.
During the Meeting
Take thorough notes. Ask those speaking to slow down if you need them to. Document any disagreements in writing.
Make sure that the goals being set for your child are challenging, yet realistic. If you get upset about the team’s decision, you can ask for a moment to calm yourself down before discussing it further. Most members of the team will understand.
During the meeting you should feel comfortable speaking up even if you’re not asked a direct question. Often, the school professionals will outnumber you and they are very familiar with each other and the process, so there is a tendency to steamroll right over the parent. Insist on being heard. Don’t allow yourself to be bullied, but also don’t be a bully. Just maintain as calm an outlook as possible.
At the same time, you want to listen very carefully to what is being said. Teachers and administrators often are not able to say things that you are, but they can delicately suggest to the parent what is possible. For example, when I was a teacher, I could not suggest that children be evaluated with a nonverbal IQ test, because that would make the school district liable for the cost of the evaluation and it was something that was outside the normal evaluation process. But I could say, “Do you have any nonverbal IQ information for your child?” Most parents don’t know about the existence or power of a nonverbal IQ test. Similarly, when I was a teacher, I used to carefully explain their rights to parents when I felt that the district was taking advantage of them. I couldn’t tell parents what to do, because my job would be in jeopardy, but I could let them know they could do something. If you have a sympathetic teacher with whom you’ve established a relationship, listen very carefully to what he or she “really” might be saying.
If your child is not present, communicate his or her fears about the process to the team. If there will be changes, you can share probable reactions of your child. If your child is present, be sure to facilitate the child’s communication with the team. Help members of the team speak to your child, and help your child speak with them. Be sure to redirect some questions that you know that your child can answer. You are an advocate for your child and representing him as well as yourself at the IEP meeting.
Remember that if you have any questions about the IEP, you can take a few days to sign it. You do not have to sign it right then and there and you should not feel pressured to do so. However, even if you do sign the paperwork, you are not necessarily agreeing with the conclusions of the IEP team. You have the right to convene the team again if you have concerns or questions.
Perhaps the best thing you can do for your child is to become involved with and reinforce her experiences at school. If you and your child’s teachers are on the same page, your child can make tremendous progress.
Here are some strategies for working well with your child’s teacher. You can find more online, but in general:
Whatever your choice for education is, remember that every choice can be changed. Most parents end up doing an amalgam of educational placements, from private to homeschooling to public in different combinations. As your child grows, her needs change and the effectiveness of the educational placement can change. Stay on top of things, and be an active member of the team that is all working to help your child. Trust them, but be cautious.