One to Two Years
• Doesn't request your attention
• Doesn't point to objects or people and/or get you to look, too
• Focuses on an activity for an extraordinary amount of time
• Doesn't respond to his name (or responds intermittingly)
• Lacks emotional affect
• Doesn't engage socially (wave bye-bye, smile) or does so insonsistently
• Cries, tantrums, or hides because of certain noises, lights, or smells
• Plays with one thing only, or with a very limited number of objects, which may not even be toys
• Doesn't use objects for their intended purpose (bangs a toy instead of playing with it)
• Perseverates on an unusual interest (for example, turns tupperwear lids and everything else into shoes)
• Is not reaching speech milestones on time or exhibits echolalia
• Exhibits unusual movements (spinning, rocking, flapping, banging, pacing)
• Fascinated by motion (spinning objects, wind, traffic)
Two to Four Years
• Isn't speaking, is echolalic, does not communicate pain or hunger, communicates sporadically, or exhibits speech apraxia
• Doesn't pretend, or pretend play is robotic and never varies
• Doesn't imitate, or imitates a specific skill but doesn't generalize that skill later on (echopraxia)
• Is uninterested in other children (or hides from them)
• Splinter reactions (wholly unaffected by total chaos, but then tantrums over a minor issue)
• Lack of affect, or inappropriate affect (laughs instead of cries when injured)
• Perseverates on something of interest to an unusual degree
• Has unusual interests for his age (can't stand Mommy & Me music class, but loves reading wholesale catalogs)
• Insists on routines or rituals (refuses to go through the back door at preschool during construction phase)
• Exhibits motor issues (balances on anything, or completely lacks coordination, or both!)
• May have such severe sensory issues that he can't eat, play, relax, learn, or sleep
• Has receptive language skills but can't follow instructions or meet expectations because he needs information presented visually or step-by-step
Help Us But Don't Erase Us
Is a Cure the Answer?
Most autistic people do not want to be "cured" per se. We do not want our autism magically erased, or erased over time via some method. You would wind up washing away who we are. As a parent, I know how much parents want for their children to be O.K. All I am saying is that the goal should never be to make an autistic person "normal" or "typical" or "just like his peers" because autism is neurological and therefore autistic people will always "be built" autistic. Instead, try to work with us, as we are, so we can learn new skills, communicate, and enjoy our lives.
Don't Some Children "Recover" From Autism?
Other factors such as allergies, prematurity, severe illnesses, and damage to the immune or nervous system in toddlerhood can result in behaviors that look very much like Autism.
For example, it appears that some children have such severe allergies to certain foods that their nervous systems and the brain are devistated. When the children first encounter these foods, usually in toddlerhood, they suddenly lose language, suddenly rock back and forth or exhibit other types of motor movements, become repetitive in play, and lose social skills or emotional affect that they may have possessed previously. Once the foods are removed from the child's diet, the child's behavior and development improve, sometimes dramatically. Because the symptoms look very much like Autism, the parents are quick to conclude that a special diet cured their child of autism, when it was really food allergies all along. A subset of Autistic children may also have these types of allergies, and when put on a special diet, some of their behaviors may also change, adding to the confusion.
For another example, often exhibit repetitive behavior, sensory issues, speech delays, motor issues, and a lack of social skills in toddlerhood. This results in the child receiving a diagnosis of PDD-NOS, one of the Autism Spectrum Disorders. But with careful intervention, guidance, and time to catch up, most preemies outgrow their delays as they mature. They can still be helped by many of the therapeutic interventions designed for Autistic children, but they are not Autistic. If the parents are not aware of these subtle distinctions, then it appears as if a child on the spectrum "outgrew" his Autism. But in truth, the child wasn't Autistic to begin with.
The fields of neuroscience and psychology will have to sort out the mess. With all the debates swirling around, it is no wonder that parents are so confused. What we know is that autism is based in the brain and can not be cured. If you are born with an autistic brain, you will go through your life as an autistic person, unless you have a brain transplant. This does not mean that an autistic person never changes. Autistic children do learn, grow up, and change just as neurotypical children do. But autism is a neurological difference that is pervasive and permanent.
Moving Away From A Disease Model of Autism
When people have a disease, the disease is not part of them. They want to do anything in the world to get rid of that disease and get back to who they were before the disease. Most of us on the Autism spectrum feel that Autism is not a disease in need of eradication. Autism is pervasive, and that means Autism is in all parts of our being. Autism is the way we think, the way we feel, the way we process the world, and the way we relate to it. We are not only our Autism, but we are Autistic people.
Acknowledging the Challenges
Most of us on the spectrum would say our feelings are hurt when we hear people all around us feeling sorry for us and wishing they could cure us, as if Autism is a terrible illness or a horrible fate. That being said, some of us on the spectrum experience great challenges trying to communicate, to understand the world around us, to get along with others, and to reach our goals. These challenges are often put in our way by society, but in any case, most of us on the spectrum appreciate it if you sincerely endeavor to help us.
Creating a New, More Adaptive Approach
If you start from a point of acceptance, and endeavor to help us reach our highest potential as autistic people, you will have a wonderful opportunity to discover autistic culture and the unique gifts autistic people have to share with the world, wherever we may be on the spectrum. Even the most challenged or challenging among us has something to teach society, has the capacity to experience joy and love, and is a whole person worthy of respect and dignity.
All autistic people have the right to believe they can reach their potential. The best way for parents, therapists, and doctors to assist in this endeavor is to accept the fact that autistic people are different-brained. Work with us the way that we are, with a new set of goals and expectations and learning methods, instead of wasting time, energy, money, and emotions trying to get us to act "normal" or to acheive the kinds of things expected of neurotypical children.
Isn't It Only "High Functioning" Autistics Who Don't Want a Cure?
First of all, I see very little evidence that we can draw a clear line between "high" and "low" functioning behavior. Some of us don't speak, and need assistance with daily tasks, but hold down a job, contribute to society in any number of ways, and thoroughly enjoy life. Some of us are highly articulate, and married, and yet have never been able to acheive financial independence, have never found a meaningful vocation, and go through life suffering from depression, anxiety, and low self-esteem. Some of us fail all of our classes at school but are highly intelligent. Some of us get perfect grades in all honors subjects but drop out because we can't handle the social pressures and live an itinerant life on the road. Some of us drive everyone nuts with our special interests when we are 10, but go on to become extreme experts in our field of endeavor as adults. So in these examples, who is high and who is low?
Many people across the spectrum, with a wide range of skills, talents, challenges, issues, and interests are speaking out for a new understanding, are working hard to promote the benefits of neurological diversity, and do not value the search for a cure but instead are focused on creating an emerging autistic culture that stands proud in its own right. Welcome.
The Major Interventions Described
Three Main Streams of Intervention for Autistic Children
1) Behavioral: In this stream, behavior is modified according to specific goals and plans. Rewards are given to Autistic children for appropriate behaviors and for compliance with behavioral expectations. Undesirable behavior is ignored or discouraged. Behavioral approaches are based on the principles of behavioral science. Many behavioral programs are collectively referred to as Applied Behavioral Analysis or "ABA", though several types of behavioral approaches exist.
2) Relationship-based: In this stream, the human capacity to form relationships based on emotions is engaged. Autistic children are "reached" using emotion, affect, and social exchange to promote and teach meaningful interaction. The idea is that learning can take place once children are taught how to navigate a world based on relationships.
3) Cognitive: In this stream, the way Autistic children think and organize their experiences is not altered but rather expanded to increase flexibility. The idea is that by engaging Autistic children and then challenging them, children become more flexible, more adaptable, and more capable of commanding their environments.
Which Method Is Best?
Many debates are going on right now regarding which of the three methods is the best one. All Autistic children are different. What we know is that Autistic children benefit from intervention, and that the earlier intervention starts, the greater the child's chance to reach his potential. But many factors influence the method of choice, including the child's personality and the family's philosophy. The best thing parents can do is to learn as much as possible about the pros and cons of each choice.
Can't Science Prove Which Method Works Best?
Parents need to realize that scientific studies on efficacy rates are difficult to conduct for several reasons. For example, in order to do a scientific study, researchers would need to have a control group of Autistic children who received no intervention. Control groups are necessary for proper scientific comparison. But it would be unfair and unethical to deny a group of Autistic children services when it is clear that services are crucial, especially in the early years of life.
It is also difficult to conduct scientific studies because all Autistic children are different. This makes it virtually impossible to quantify the "amounts" or even the types of challenges of children entering a certain program. In other words, we cannot say, 15 children, all of whom have exactly 25% social skills, 2% communication skills, and 8% repetitive behavior, entered into a certain type of intervention and after a set period of time, say six months, 10 of the children showed 76% improvement across the board, or 82% improvement in social skills but only 52% improvement in language.
When deciding on an approach to use with your child, the best thing to do is to watch the different techniques being used. If you cannot view a specific technique in action, you can buy or borrow video tapes from practitioners of the different streams, attend informational seminars, or talk to other parents who have used the different techniques. Don't be confused by false claims to cure Autism, or false claims of immense scientific evidence proving one technique is better than the others.
Where Can Parents See Each Method In Action?
Behavioral: Most Early Intervention therapists use behavioral approaches and methods. As well, most schools and education programs for older Autistic children also use primarily behavioral techniques. Occasionally, a program may use an eclectic blend of approaches, but this is rare. To see behavioral approaches in action, call your local school district and ask to see an Autism-specific or general special education classroom that uses behavioral approaches.
Relationship-based: Most relationship-based techniques are provided by parents-as-therapists, who learn what to do at seminars. Some relationship-based techniques are now provided by trained therapists as well. Check with parents at local support groups or look through local directories of practitioners working with Autistic children to see if any of them are using relationship-based techniques and ask if you can watch.
Cognitive: The cognitive approach is provided by practitioners of the Miller Method. Several Miller Method schools or school-based programs exist in addition to therapy provided by Miller therapists and parents-as-therapists. You can purchase videos of the Miller Method in action on the Miller Method website.
Where Can Parents Find More Information on the Three Main Streams?
To find more information about the behavioral stream of techniques:
• The Association for Behavior Analysis International has information about Autism and ABA, including credential guidelines for ABA therapists and ABA programs.
• The Center for Autism and Related Disorders has a very user-friendly explanation of ABA on their website.
To find more information on the relational stream of techniques:
• A structured version is found in Relationship Development Intervention.
• A child-centered unstructured version is found in the Developmental, Individual-Difference, Relationship-Based (DIR) or "Floortime" approach.
To find more information on the cognitive stream of techniques:
• Visit the website of the Miller Method.
Zosia's Opinion of the Three Methods
For what it is worth, I will offer my very humble opinion. I believe that the cognitive approach is highy effective, and may work for many Autistic children across the spectrum.
Some children benefit from behavioral programs because specific skills are taught in a step-by-step manner. Some children benefit from relationship-based approaches because when emotions are engaged, people are more readily motivated to try new skills. Autistic people often do need lessons broken down into managable components, and all people pay attention and learn faster when emotions are activated.
But, because Autism is neurological, one must ask with any method, what inner learning is taking place? With a behavioral approach, can the child reproduce desirable behaviors outside the program when not rewarded? Are the behavioral goals set up in behavioral programs appropriate for an Autistic person, or are the goals picked based on what society expects of neurotypical children? In a relationship approach, can the child reproduce appropriate and meaningful social behaviors in the rapid-fire ever-changing context-driven "real" world of interpersonal relationships?
The cognitive approach attempts to teach an Autistic child how to tolerate the inevitable fluxuations of life and to moderate his responses to the world. This often results in greater flexibility, less tantrums, and a higher tolerance for life's random quality, with an increased ability to function in a variety of environments and to solve many different kinds of problems.
Additional Interventional Approaches
• American
• Classroom Based
• International
• Physiobiological (diet, suppliments, sensory integration)
In Asia, Europe, and the Middle East, other intervention methods have been developed or are being investigated. Some examples:
• The Higashi School of Boston is based on Daily Life Therapy
from Japan developed by Dr. Kiyo Kitahara. The program emphasizes physical movement, art, and daily life skills.
• The Autism Resource Centre in Singapore has started the Pathlight School and also trains service providers via the weCAN Initiative to provide a "synergistic...Montesori-type..." approach that recognizes the need for individually tailored intervention and that emphasizes empowerment, self-advocacy, and integration into the community.
• The Mifne Approach developed in Israel involves the entire family in an intensive process that includes all members. The therapy is relationship-based in nature but specifically uses the human capacity to experience pleasure to engage Autistic children.
| Intervention |
Inventor |
Pros |
Cons |
Behavioral
Applied Behavioral Analysis(ABA)/Discrete Trial Training (DTT) |
Dr. Skinner;
Dr. Lovaas |
Step-by-step instructions; tasks broken down; specific skills taught; progress recorded; rewards given for compliance |
Ethical issues around goal selection; teacher directed; child may develop dependence on rewards, may be unable to reproduce gains outside program, may acheive compliance without true learning |
Behavioral
Pivotal Response Training (PRT) |
Various |
An extension of ABA techniques; concentrates on pivotal behaviors needed to learn others; attempts to reduce dependency on rewards; considers child's interests; uses natural learning opportunities |
See
ABA/DTT |
Behavioral
Verbal Behavior (VB)/Applied Verbal Behavior (AVB) |
Various |
Focus on expressive language skills using behavioral teaching methods; emphasis on functional language skills [ability to ask for a cookie, not just point to pciture of cookie when asked] |
See
ABA/DTT |
Behavioral
Contemporary ABA/Natural ABA |
Various |
Natural and play-based learning opportunities are used [while the child is playing on the jungle gym, for example]; natural rewards and consequences emphasized; learning goals are child-centered; human factors considered; goals may be based on self-advocacy |
See
ABA/DTT |
Relationship-based
Relationship Development Intervention |
Dr. Gutstein |
Child is taught dynamic intelligence, defined as the ability to discern social skills and relationships [e.g., instead of teaching specific social skills, the child is taught how to figure out what to do in the social environment]; skills are taught in a progressive, structured format. |
Parents must learn how to provide the therapy themselves; seminars and consultations cost money; some parents find it difficult to implement the therapy on their own. |
Relationship-based
Developmental, Individual-Difference, Relationship-Based (DIR) or Floortime |
Dr. Greenspan |
Child receives therapy in natural situations during 1/2 hour sessions several times a day. Therapists follow child's interests and engage the child socially and emotionally based on the child's activities. No structure is followed; no specific skills are taught per se. Child gains language and skills through interactions. Some early intervention therapists, preschools, elementary schools, and camps use Floortime methods. |
Parents may be unsure what to do if they are providing the therapy. Schools may insist that specific goals and target behaviors be listed as part of child's education plan, causing tension with Floortime providers. |
Cognitive
Miller Method |
Dr. Miller |
Child's perseverative play patterns and ritualistic behaviors are challenged to improve cognitive flexibility. Child's awareness of self, world, and others is enhanced using special play equipment (slides, climbing boards, platforms). Language is taught in special ways that account for Autistic neurological differences. |
Travel to Dr. Miller's Language and Cognitive Development Center (LCDC) outside Boston required for assessment and parent training (video conferencing may be available instead). |
The Biomedical Recovery Debate
At autism conferences and meetings, we are hearing a lot about "Biomedical Intervention" and "Recovery" of autistic children. What is this all about and why are these issues such a source of political friction? Again, with as much journalistic neutrality as possible, I will try to present all the major issues and concerns surrounding the Biomedical Recovery Debate.
What is biomedical intervention? Basically, biomedical intervention includes a very wide range of essentially medical procedures, usually done under the supervision of a medical doctor (although not always) in order to improve an autistic child's ability to function in the world. Examples of biomedical treatments include everything from suppliments and special diets to intravenous injections of vitamins, hyperbaric oxygen therapy, and chelation. At the heart of the controvery is argument over the nature of autism itself. Advocates also worry about the safety of some of these protocols.
Mainstream scientists and most professionals consider autism to be a non-acquired condition. You are born with a different brain. The way you process information and interact with the world is different. Autism does not go away, but an autistic person can change over the course of his lifetime. Autistic children are also different than autistic adults, but most of the information we have is about children and their symptoms and needs. Short of a complete brain transfusion, somebody can not become "un-Autistic". But with enormous gains in the services offered to autistic people and their families, educational supports at school, opportunities to participate in community life, and society's tolerance, the autism picture is not tragic or hopeless, as people once thought it was.
Dr. Bernard Rimland, a doctor of psychology, was one of the first professionals to suggest in the 1960s that autism is neurological. He is credited with demonstrating that autism is not caused by unloving or incompetant parents. Dr. Rimland went on to form two organizations, the Autism Society of America, and the Autism Research Institute. While Dr. Rimland is remembered for his autism activism, and for his significant impact on our understanding of autism, he began theorizing in the 1990s that mercury in vaccines was causing a rise in autism. This has been disproven. In any case, the Autism Research Institute went on to establish DAN! - Defeat Autism Now - an organization that is dedicated, according to the DAN! website, to spreading the word that "Autism is Treatable. Recovery is Possible!"
This is very important for parents to understand: DAN! proponentsagree with mainstream scientists and professionals that autism is rooted in the brain and that autism is not caused by bad parents. The controversy is about when and how this brain difference occurs. Most scientists and researchers agree that autism is something you are born with, and no matter how much you learn or how many gains you might make, you will have a unique life-long neurological structure and cognitive profile that does not go away. DAN! believes that autism is caused by something external. When you get rid of the external agitating factor, the child's symptoms disappear (or at least have the potential to). See the DAN! website for a complete explanation.
This "chicken egg" problem has resulted in a political split or rift in the community, which I think is ultimately a shame because we all want the same thing - the best for the autistic children and adults we love and care about. We need tons more research to understand the nature of autism. The answers to these questions are not on the horizon.
Meantime, we must be careful to devote resources to solving pressing daily issues like providing early intervention for autistic children and creating housing and employment opportunities for autistic adults. We also have to be careful, educated, and open-minded about whatever we choose to do. Parents need to consider several issues when thinking about or deciding on biomedical treatment for their child, here summarized.
•Some autistic children do improve when they receive needed healthcare.
But this is true of all people. Remember the last time you had the flu? You probably felt awful and curled up in bed for a few days. When you don't feel well, you really don't feel like chatting and you can't concentrate at school or at work. If a child is sick, he's not going to be able to learn and to play and to do all the things he wants to do. Too often, when autistic children have stomach troubles or can't sleep at night, parents are told, "That's just part of autism, deal with it." Parents should pursue special healthcare for their autistic children when the child has symptoms. It appears that autistic children have higher incidents of stomach problems, allergies, rashes, sleep disorders, auto-immune issues, and medication reactions than non-autistic children. So if your child is sick or symptomatic, don't just shrug and chalk it up to the autism spectrum. Persist until you get the medical attention your child needs. People with developmental disabilities have as much right to proper healthcare as anyone else.
•Some parents swear by a certain diet, or a certain vitamin, or a certain treatment.
But be careful. Human beings are all different. One child may indeed need probiotics for yeast. But if your child doesn't have a yeast infection, then she doesn't need them. All medical issues should be under the treatment of medical professionals and tailored to the individual child. Don't just "do" a treatment because everyone else is. Also, remember, scientists concur that autism is rooted in the brain. Most of us are always going to be autistic, no matter what you feed us or what medicine you give us. I see so many parents who feel sad and guilty because they tried a special diet, or gave their child special vitamins, and nothing happened. It's not your fault, not your fault at all.
•Some parents claim their child has "fully recovered" and is no longer autistic.
We can't disclaim another person's reality. But again, proceed with caution! A young child may respond to biomedical interventions fantastically and his family and doctors witness great improvements. He loses his label. But, what happens in later developmental stages? What happens in adulthood? What I am suggesting is that we should be happy if as a community we can find ways to help autistic children feel better and learn skills they need to enjoy life, but autism is a life-long situation. In the mainstream view, no matter how many gains a young child makes, he still has an autistic brain. Parents need to keep advocating on the child's behalf. He may need supports later on down the road. Don't expect the child to be perfectly normal and then feel disapppointed when, as a teenager or an adult, he needs help again.
•Remember, it is theoretically possible that recovered kids had something else to begin with, not autism.
The science is not in yet. It is true that a very young toddler with severe allergies, an auto-immune disorder such as Celiac disease, sensory issues or neurological problems, delays due to prematurity, or other chronic health issues can have behaviors that look very autistic. Autism is a behaviorally defined disability. You can't give a blood test to determine if someone is autistic. You look at the behaviors. Unfortunately, many other things can cause the same or very similar behaviors, causing lots of confusion right now.
•Some treatments may not be safe, may not be tested, may not have been researched, or may not have been developed for use with autistic people.
For example, chelation therapy is used for people who are exposed to enormous levels of toxic chemicals in an accident or at work. The toxins - usually lead from paint - are "washed" out of the blood stream using risky methods. Nobody has proven that toxic chemicals cause autism or that autistic children as a group categorically have higher levels of toxins. Nobody has tested chelation on autistic children to determine the safety of the procedure. A few autistic children have died during chelation because unfortunately chelation washes out all the good chemicals in your blood too, like potassium, which your heart needs to keep beating. Don't get so caught up in trying to make your kid normal that he dies!
•Sometimes the real issue is coming to terms with a child's strengths.
It is not worth subjecting your child to a potentially harmful, risky procedure in the hopes of sqeezing out a little more "normality". How far as a society do we want to go with this? People can still exist and have good lives using alternative means to communicate, share, and contribute.
•The Advocate's Chart of Concerns Regarding Biomed
| Safety concerns: | Some treatments are dangerous, and some protocols may not have been tested or researched, putting autistic children at serious risk. |
| Lifespan concerns: | Children who hear that they are "recovered" may be afraid to let people know they are still having trouble. Parents may spend thousands of dollars on treatments and then be dismayed when their child is "still" autistic. Autistic adults may be blamed for not going to a doctor to get fixed. Society may slash programs for autistic adults as well as school programs because of the inaccurate assumption that autism can be cured now. Autistic people may not be taken seriously when we explain our problems. For example, some of us are reporting that we are already getting responses like "You just need to take vitamins for that," or "Change your diet and you'll be fine. Now stop complaining." Autism is a life-long condition. Autistic people can change and grow, but autism does not go away. |
| Intervention concerns: | Some parents focus so much money, time, and energy on biomedical treatments that meantime the child is not getting other types of interventions, such as sensory integration and behavior therapy that can be very useful. |
| Focus on weaknesses: | We have to talk about a child's strengths. If a child is very smart and can communicate adeptly using a picture exchange system, he has a means of functional communication. This is a strength. Let's say "He talks in pictures" instead of "He can't talk" in order to reduce panic and increase support. Not everything has to be medicated for a person to have a good life. |
| Ethical concerns: | Are some unscrupulous doctors preying on a parent's vulnerability? Parents want to do everything to help their child. Be careful so you are not taken advantage of - ask lots of questions, insist on facts, and advocate for your child always. |
| Self-esteem issues: | Some autistics report that they feel really bad about themselves when they go to conferences and all they hear about is how to recover children, as if something is inherently wrong about being autistic. As a community, we have a responsibility to find a way to conduct a civil discourse about the scientific, ethical, and practical issues facing us while simultaneously respecting, valuing, tolerating, and adjusting to the autistic way of living and loving. Think about the impact of what you are saying on the self-esteem and self-image of autistic children and adults. We do hear you just fine, and sometimes the messages really hurt, no matter the intention. |
| Medical concerns: | Medical concerns? Yes. Sometimes parents focus so much on "fixing" the autism that they neglect other medical issues that are just as important. People with developmental disabilities deserve proper medical care, including relief for stomach problems, sleep trouble, and pain. In other words, if you are providing adequate, safe, proper medical care for your child, that's great - that is what we as parents are supposed to do. It is a slippery slope, though, to treatments that are implemented at great expense and risk solely to make the child "more normal" - a skeptical goal anyway. |
The ABA Debate
ABA or Applied Behavioral Analysis is a behavior modification method based on the work of Dr. B. F. Skinner in the 1950s and 1960s and other scientists who endeavored to study human behavior scientifically. Behavior therapy developed in the early 1900s in reaction to standard psychotherapy. Freudians and Jungians attempted to discover the hidden and secret inner workings of the mind, but behaviorists like B.F. Skinner wanted to study only observable actions. ABA was not developed for autism. Behavior programs have been used successfully to assist people in reaching a wide variety of goals.
One form of ABA was developed for use with autistic children by Dr. O. Ivar Lovaas over several decades, beginning in the 1960s. Several "styles" of ABA are now used widely with children on the autism spectrum, including verbal ABA and natural ABA. The central idea is that human beings, like all animals, will behave in certain ways if the behaviors are rewarded, and will drop other behaviors that are not rewarded. Of course, human beings are more complicated than that. But based on this initial premise, programs are created to increase and to extend a child's adaptive, communication, and social behavior.
DTT, which stands for Discrete Trial Training, is - or was - one of the primary ABA techniques used. DTT consists of repetitious drills that occur for a set duration of time. For example, in a DTT session, a child will be asked to say his name. If he says it correctly, he receives a reward, such as a cookie, a sticker, or a star on a chart. The therapist can record how many times he says his name correctly, how many times he must be prompted before he will say it, and how many times he can say it correctly over a certain duration - perhaps 5, 10, or 30 minutes. This is how a child's learning is measured and why people say ABA is "data driven" - data about a child's behavior can be collected and then reviewed to adjust the educational goals.
Today, most ABA programs have added a wide variety of teaching techniques in addition to or in lieu of DTT. For example, chaining involves having the child learn one small part of a larger activity and then adding in steps one by one. A child learning to brush his teeth will work on just taking the cap off the tube of paste. Once he succeeds at this step, he will work on applying the paste to the brush next. Visual modeling is another technique. Natural ABA programs seek to create a fun atmosphere where certain behaviors are encouraged and rewarded via play dynamics. Verbal ABA focuses on functional communication - e.g. being able to ask for food when hungry or a sweater when cold.
ABA practitioners strive to reduce the need for prompts and rewards. Any ABA program should encourage the child to generalize the skills he has learned to other environments and other people. For example, if the child learns to respond when his teacher calls him, he should also practice responding to his parents, his sister, or maybe a peer. He should also practice responding to the teacher outside the classroom - perhaps on the playground or in the lunchroom.
Some parents are adamant that ABA is the only educational method that works with their child. Philip Schwarz, autism advocate and parent of an autistic son, describes the benefits he says his son received from participating in an ABA program. Because skills are taught step-by-step and because ABA therapists work on defined behaviors, many autistic people can understand what is expected of them. They also have an opportunity to expand their skills and behaviors using learning methods that coincide with the autistic way of thinking, not against it. Parents and practioners also point out that some autistic children are so socially disconnected that they cannot be taught without concrete rewards and consequences.
So what is wrong with ABA? Why has ABA become so contentious? ABA has become the center of controversy for several reasons, which I will describe with as much journalistic neutralality as possible.
• Some people say that research proves ABA is the best or the only method for working with Autistic children.
ABA has proved highly successful for a full range of human problems in both children and adults. But how effective is ABA in changing the behavior of autistic children? Dr. Lovaas conducted a study and in 1988 he published a report claiming an effectiveness rate somewhere in the 40% - 50% range. But critics point out that he did not have one standard criteria for entry into his program, nor did he explain what achievements constituted success. He also used aversives like slapping and shouting to demand compliance that are no longer considered ethical. Additional research studies into the pros and cons of using ABA with autistic children continue. Preliminary data indicate that ABA may be a very effective protocol for working with autistic children when implemented properly, but the methodological problems of the studies can't be ignored and much more research needs to be conducted.
• Parents are often told that ABA is the only method for teaching autistic children, or the only method that works.
In the United States and in other countries, several methods have been developed to teach autistic children relationship, adaptive, and academic skills. These other methods are used successfully, but the rates of success are not known. Again, in some cases research has not been conducted and in other cases research is preliminary or not peer-reviewed. Parents need to scrutinize both sides of this debate: You can't completely discount a method simply because of the paucity of research. On the other hand, you need to be a very careful discerning consumer! Remember, ABA has been shown to be effective overall. The debate is about how effective ABA is as a method of behavior change for those on the autism spectrum; which ABA techniques are most effective for which types of autistic children; and to what degree factors like the quality of the teacher impact outcomes.
• Behavioral therapy may teach skills but may not impart understanding.
The principles of behavioral science hold that if you train any animal - including humans - often and long enough, you will get the desired behaviors. However, at least in the case of human beings, this training does not always teach a person how to cope with or manage the instincts, skills, and ways of thinking he intrinsically has. The child is still autistic inside, and the world may be just as confusing, disorganized, overwhelming, and socially challenging as it was before he was taught specific skills or began complying with behavioral expectations in turn for the rewards received.
• ABA practitioners may not take into account human factors.
Just like neurotypical children, autistic children have feelings and issues. A child may not perform a requested task, or may not perform the task correctly, or may perform the task inconsistently, for a wide variety of reasons. He may not like his teacher. He may be having a bad day. He may be having a sensory issue with the lights. He may be bored with the task. He may be looking forward to dinner. The negative result of not taking into account human factors is that a child in an ABA program may not be allowed to progress to new or more complicated tasks if he hasn't completed previous ones a certain number of times correctly, even if he is ready or eager to proceed. An ABA therapist may incorrectly assume he has a cognitive problem or is uncooperative based on the data when in fact he was simply distracted, bored, under-challenged, or upset. It is crucial that any therapist working with an autistic child take into account that particular child's feelings, temperment, personality, interests, physical needs, and personal boundaries.
• Children may become too dependent on prompts and rewards.
The child may learn to perform a task when commanded to do so and when rewarded for compliance. But what happens outside the therapeutic setting? Will he have the motivation to follow accepted norms of behavior? Will he feel as though he has spent years "in training" for no true purpose, other than to collect the rewards? Will he be able to act or speak spontaneously? Trained and certified ABA therapists vary and rotate the types and frequency of rewards to prevent dependence. They also incorporate generalization of skills to other environments into their behavioral programs. This is something parents should ask about and look for in their child's ABA program. Carrying the lessons home can help with generalizing, so stay up to date with what is happening in your child's program. For example, if your child is learning how to choose what he wants to eat for snack during his ABA school-based program, replicate the exercises during breakfast, when the family goes out for pizza, at grandma's house during a visit, etc.
• A child's exposure to the "real world" may be limited.
Most ABA practitioners work one-to-one with the autistic child for many hours a week in the child's home. The child may have little time for less structured learning activities and little time to see other children. ABA school programs are usually self-contained, and the children in the program do not see or interact with neurotypical peers. They are also likely to be grouped with autistic peers who share the same or similar characteristics. Therefore, they do not benefit from meeting autistic children across the spectrum (those with more or less speech, those with more or less interest in socializing, those with more or less academic skills), children with other types of disabilities, and neurotypically developing children. This limits the child's access to the wide-open world, which at times can be challenging or even brutal, but which he will need to live in at some point and which more often than not is filled with opportunities to learn from others and to teach others about respect, tolerance, and getting along. Be sure to balance your child's time so he has all the "regular" opportunities of childhood, including "down time" to just be himself. Kids need time to watch clouds in the yard, go to the neighbor's house when you're out of eggs, take a trip to a museum, curl up with a book or favorite DVD, bounce around the house in PJs, or simply "do nothing" once in a while.
• Learning goals established for the child need to consider the autistic child's rights and needs.
No one can reasonably argue with the desire to teach a child to ask for food when he is hungry. But some learning goals are suspicious. For example, ABA techniques have been used to get children to eat meat or to wear blue jeans (see more here). Parents may want to increase a child's options and exposure to different choices. But be careful. Always ask, whose learning goal is that? Autistic children's rights to personal choice, individuality, and creative freedom need to be protected. Parents should always review learning goals and should be allowed to participate in the development of objectives and incentives.
• Are there any negative side effects to ABA techniques?
Children in any program - behavioral, relationship based, or systems based - can experience stress, confusion, and reluctance. Doing anything for 40 hours a week - even 20 - can be taxing, especially if the child is still very young. Signs that ABA techniques may be causing your child stress include a loss of skills or language, an increase in echolalic speech, a refusal to comply at all whether or not a reward is offered, greater withdrawal or increased social isolation, behaviors indicative of over-stimulation, and the development of self-injurious behavior that wasn't there before. Any child in any program exhibiting such signs of stress deserves serious and rapid attention to the core issue. In my experience, most special needs children and adults are not misbehaving. Most "bad behavior" is really an inability to advocate for oneself.
The Vaccine Debate
Some parents see changes in a child's behavior and development right after or around the time of various vaccinations, usually between 18 and 36 months of age. They notice that a typically developing child suddenly loses speech, or begins rocking back and forth, or reacts negatively to previously neutral stimuli (e.g. suddenly can't stand bright lights).
Thimerosol, a vaccine perservative derived from mercury, came under scrutiny as possibly causing autism, but scientific studies have not found proof of a causal relationship between thimerosol and autism. Anyway, thimerosol breaks down in the body quickly, so it is unlikely that a child would be poisoned by this substance. If a child were injured by the thimerosol, he would display symptoms of mercury poisoning - the old "mad hatter's syndrome" - not autism. To alleviate health concerns related to mercury issues, some countries have banned thimerosol in vaccines and a few politicians here in the United States are also pushing for a ban at the federal and state levels. Most pediatritians administer vaccines without thimerosol to be on the safe side. Ask your pediatrician for thimerosol-free vaccines if you are concerned. But no medical evidence exists proving thimerosol causes or induces autism.
Some suspect that the vaccines themselves are triggering autism, but scientific studies have proven that this is not true. It must also be remembered that autistic children existed before routine vaccination. Children who have not been vaccinated as a precaution have still wound up on the autism spectrum. Autism is considered a non-acquired condition - that is, you are born with it. Vaccination is not a point-blank cause of Autism.
That being said, many professionals and parents are beginning to raise the alarm about the dangers of vaccines in and of themselves (nothing to do with autism per se). Vaccines can be chock full of toxic biological agents that in the best of circumstances trigger the body's immune system to create antibodies to the associated disease(s) but in the worst of circumstances can cause the diseases they are supposed to innoculate against. See medscape re: reactions to various vaccines; CDC re: smallpox vaccine; Australian government re: vaccine reactions - just three sources out of many on this topic. It appears that vaccines can make some children very sick, damaging or destroying their immune systems, triggering allergies and digestive disorders, and causing brain injuries and associated behaviors and symptoms that sometimes may look very much like autism.
For example, measles and rubella can cause encephalitis, resulting in brain damage. Mumps can cause meningitis. This is why doctors decided to vaccinate in the first place. But in rare cases, often if a child is already sick, vaccines can actually cause the damage they are designed to prevent. Some children appear to have severe adverse reactions, succumbing to the disease(s) and contracting symptoms. This can result in developmental delays and other problems, which may be inaccurately attributed to autism.
Taking matters into their own hands, some parents vaccinate children only when they are older. Other parents ask the doctor to slow down the vaccine schedule, giving only one vaccine per visit and waiting on or separating out "multiple disease" vaccines. Not vaccinating your child may put him or her at risk for terrible diseases like polio and measles. Your family has to decide what is best.
If your baby or child has a bad reaction to a vaccination, call the CDC Vaccine Adverse Event Reporting System [VAERS] at 1(800) 822-7967.
The Gluten-free Casein-free Diet
A number of parents who have put their autistic children on a strict gluten-free and casein-free diet report a sometimes dramatic reduction in a child's autistic behaviors.
Wheat, spelt, barely, oats, and rye contain a protein called Gluten. Milk - from any species - contains a protein called Casein. Some scientists suspect that autistic children in general, or a subset of autistic children, do not properly digest these substances, which then turn into waste opiates. The waste opiates cuase the child to appear high, resulting in spacey, withdrawn, and nonverbal behavior. The inability to digest these proteins properly may also cause allergies, immune responses, and damage to the nervous system.
It is currently unknown how diet relates to autism. Studies are being conducted in Europe and the United States to better understand the role of diet and food intolerances in relationship to autism. The University of Rochester is conducting one such study.
Parents should realize that doctors familiar with special needs diets may offer medical tests to determine whether a child is "sensitive" or allergic to a certain food substance. But the science is not completely understood and some children who pass all the tests still improve on the diet. For this reason, it may be worth it to your family to try the diet for 6 to 12 months. Removing foods containing gluten and casein is not considered harmful, as long as the autistic child maintains adequate nutrition. Some children improve when soy, corn, food dyes, artificial flavors, and artificial additives are removed, too. Special diets are easier to follow these days, with many health food stores and even regular grocery stores offering suitable alternatives.
Be sure to consult your pediatrician, a pediatric nutritionist, or a doctor familiar with special needs diets to make sure your child is receiving adequate nutrition. Then educate yourself thoroughly before embarking and keep copious notes so you can document any changes that occur. Plenty of websites, books, and magazines offer information, resources, and recipes. The website of the Autism Network for Dietary Intervention is a good place to start.
Parents should be skeptical of any claims by anyone to cure autism. A special diet may help your child focus, produce speech, handle sensory input, relax, obtain clarity of mind, releive stomach upsets, and heal skin rashes. But no one, and no diet, can cure autism permanently.
Some parents claim that once their child started the diet, all autistic behaviors ceased and the child became virtually indestinguishable from his peers. In these types of cases, two possibilities exist.
Possiblity One: The child began feeling much better, and he was suddenly able to learn, to focus, and to interact. He made great developmental gains. But he is still navigating the world with an autistic brain. He may have issues at later developmental stages, including in adulthood. Please keep supporting your child and advocating for him no matter how well he is doing. Some children are also very sensitive and may "pick up" on the idea that they are supposed to be "normal" now. Please provide your child space and permission to be himself.
Possibility Two: Children with other medical conditions, such as severe food allergies or prematurity, can exhibit autistic-like behaviors - especially in toddlerhood. In this case, the child healed from food intolerences or outgrew his prematurity. He did not "recover" from autism.
Those of us who are on the spectrum have different brains and different nerves. While we may benefit from improving our diets, like anyone might, we will still be living, loving, feeling, and thinking as autistic people.
Some of our family's favorite GFCF foods:
NEW - Medications
If you are going to try the diet, don't forget to check your child's medications and suppliments! Many have gluten or casein for flavoring or to bind the active ingredients. Town and Country Compounding Pharmacy in Ridgewood, NJ, will check your medications and compound common and special medications for you if necessary - plus they offer FedEx overnight shipping to anywhere in the U.S.A. When our daughters needed Prilosec, this was the only pharmacy that could compound and then flavor the medication properly (and believe me, we tried many places all over the USA until we found these guys). They are very supportive of autistic and special needs families, so please support them.
• Gluten Free Pantry muffin, dessert, and bread mixes: Easy to make, taste great, not too crumbly (check ingredients, some items are only GF!).
• Glutino Breakfast Bars: Variety of flavors, easy to take to school or in the car, do not fall apart.
• Perky-O's Cereal: Rivals the national champ. Your preschoolers need not feel left out on the playground.
• Van's Frozen Waffles: For those mornings when the toaster is the only thing you can operate (just check the box - not all flavors are GFCF!).
• Applegate Farms Deli Meat: The dextrose is from corn, so the products are GFCF safe.
• Wellshire Farms GF Chicken Nuggets: Kid-approved dinosaur shape - need we say more?
• Ian's Allergen Free Line: Fish Sticks, Turkery Corn Dogs, and Chicken Nuggets - again, kid-approved, just be sure the package says Allergen Free (not all Ian's products are).
• Tinkyada Rice Pasta: Cooks just like regular pasta, plus kid-friendly shapes including bunnies, wheels, shells, spaghetti, and lasagna noodles.
• Amy's Frozen Entres: Some are GFCF. The website provides clear information and lists which products are safe for the diet.
• Chebe Bread: Unusual manioc-based bread mixes. We use the all-purpose flavor for challah by adding extra egg. (Read carefully - some flavors aren't CF!).
• Bragg's Amino Acid Topping: Sounds gross but tastes great, replaces soy sauce (which is fermented wheat - go figure), and adds protein to boot.
• Yummy Earth Lollipops & Candy: No dyes, no artifical flavors, no corn syrup. Great for kids who can't have dyed treats.
• Paskesz Pareve Chanuka Gelt: Strictly non-dairy. Hit the Holiday tab to find them. Other pareve treats without gluten as well. Read ingredients carefully.
• Sunspire Chocolate: Bars and candies - not all are GFCF so check the labels closely!
NEW
• Sweet Sin Bakery: How lucky we are to be local to these guys! Everything's great. Mostly in the Maryland/D.C./Virginia area, but they will ship. Very convenient for kid's birthday parties, dinner parties, or when you just need a really good loaf of GFCF bread!
What Is a Sensory Issue?
Most Autistic people experience sensory issues. I wrote extensively about sensory issues, the sensory system, and techniques for coping with sensory emergencies in Chapter 1 of my book, Life and Love: Positive Strategies for Autistic Adults.
In brief, all human beings take in sensory information from the world using the five senses, plus the proprioceptive and vestibular senses. The nervous system of an Autistic person correctly perceives the incoming sensory information, but is overwhelmed or underwhelmed by the signals.
As a result, an Autistic person may run from ordinary noises in a room that aren't bothering anyone else. Or he may crave certain textures in his clothing that most people would find scratchy.
It is important to look at underlying sensory issues when trying to understand the behavior of someone Autistic. Non-verbal Autistic children may be unable to communicate sensory discomfort or special sensory needs, resulting in behaviors that are easily misunderstood. A child may not be able to pay attention to instructions if the lights are bothering his eyes, or he may push away someone trying to hug him not because he is incapable of love but because ordinary touch hurts his skin. It is important to determine if a child is experiencing sensory distress or a sensory imbalance before jumping to conclusions.
Certain techniques seem to work for some Autistic people in reducing sensory problems. For example, occupational therapists can design exercises and programs that make sensory experiences less overwhelming for those that are hypersensitive, or that make sensory experiences register for those who are hyposensitive. Physical and occupational therapies can help an Autistic person rebalance the proprioceptive and vestibular senses also.
Some parents of Autistic children and some Autistic adults have tried and reported good results from a variety of techniques that readjust the body's actual processing of lights, sounds, smells, and touches. As a group, these techiniques are referred to as "sensory integration therapy". Most methods and programs have not been studied scientifically, and most are expensive, so proceed with caution. But don't rule them out all together. Many, many people have experienced great benefit from sensory integration techniques.
Navigating the Early Intervention Zoo
The History of Early Intervention
How EI Is Run
Who Pays For EI Services?
Finding EI In Your State
What Happens Once You Contact EI
Making Initial Contact
Expediting the Initial Contact
Preparing for the Initial Assessment
Assignment of Your Service Coordinator
Creation of the Individualized Family Service Plan (IFSP)
Negotiating at the IFSP Meeting
Your Official EI Start Date
How Therapies Are Provided
Know Your Rights
What to Expect as Therapy Progresses
Transition Planning As Your Child Approaches His Third Birthday
Special Information for Parents of Autistic Children in EI
• The History of Early Intervention
In 1975, the federal Education for All Handicapped Children Act was passed in Congress, requiring all states that received federal money for special education to provide disabled students with free and appropriate educational services. Unfortunately, infants and toddlers were not covered by this legislation.
In 1986, the law was amended to include at-risk infants and toddlers, but it wasn't until 1990 when the Individuals with Disabilities Education Act (IDEA for short) was passed that the current system was firmly established. This law requires all states to provide education and other needed services via the public school system to disabled students ages 3 to 21, and encourages all states to provide Early Intervention for infants until age 3. These are known as Part B and Part C of the IDEA respectively. Currently, all states have Early Intervention service programs.
• How is Early Intervention Run?
Each state selects either the state's education agency or a different state agency to handle Early Intervention services. In most states, parents concerned about a child contact a county representative to activate the Early Intervention process.
• Who Pays for Early Intervention Services?
Each state sets its own rules. In most states, parents pay some portion of the costs based on income, in which case you may be required to show tax forms or proof of earnings. In other states, all or some services are free. Occassionally, the state will try to have the parents' health insurance, if the parents are insured, cover a portion of the costs. Ultimately, all children under 3 have the right to receive the therapies they need under the Early Intervention initiative, so do not let fears about cost deter you from calling.
• How to Find Early Intervention in Your State
If you can't find the right number to call in your local phone book or online, ask your pediatrician, the pediatric department of a local hospital, or the special education department of the local school system.
You can also check the website of the National Dissemination Center for Children with Disabilities. They have a state-by-state list with department phone numbers and agency contact information (tip: scroll down to see the list of states once you get to the site).
• What Happens Once You Contact Early Intervention
Please note: the information below is based on my experiences with the state of New Jersey. Your state may have different laws, different schedules, and different wait times.
Making Initial Contact with Early Intervention
When you first make the call to Early Intervention, they will schedule a time to come to your house and evaluate your child. You may have to wait up to two months for an appointment, so call as soon as you think your child is having trouble.
Expediting The Initial Assessment
The only way to speed up the Early Intervention process is to pay out of pocket for a private assessment with appropriate medical and psychological or psychiatric professionals. Usually you need to see an M.D. such as a neurologist or a developmental pediatrician, AND a neuropsychologist, psychiatrist, or psychologist. With written assessments from one medical and one mental health professional, Early Intervention will schedule an appointment much sooner. Note: this was the case in my state, New Jersey. The laws in your state may be different. The only way to find out is to call and ask.
Preparing for the Initial Assessment
Be sure to find out what, exactly, the Early Intervention assessment team is going to assess! Demand that they send one person to assess behavior and development, one person to assess speech, one person to assess motor development - in other words, one person for each area of concern. This is very important! Do not assume Early Intervention will send all the professionals you need or the right professionals automatically. This is an important induction for you into your new role as your child's personal advocate.
Also be aware that Early Intervention programs contract with many different therapy companies. Your child may be assessed by a speech professional from one company, a behavioral specialist from another company, etc. - and sometimes the professionals cannot all come on the same day, requiring the initial assessment to take place over a few days or even a few weeks. Be extremely persistant in scheduling all the assessments you need because therapy can't start until the assessments are done.
Real life example: We contacted Early Intervention because my daughters were delayed in speech, but Early Intervention had them assessed only by an occupational therapist and a behavioral specialist. In other words, no one assessed their speech! This meant that they were on track to receive occupational and behavioral therapy, but no speech therapy! We were told that since we did not have a speech assessment done as part of the initial assessment, we had to wait until after other therapies began, at which point their therapists could request additional assessments. This wasted weeks of time. To recap - be sure to request assessments for each area of concern and fight for them if you must.
Assignment of Your Service Coordinator
The Early Intervention office you contact initially will schedule the assessment and also at some point will assign you a service coordinator, who may or may not be part of the same office. The service coordinator will be the person who schedules the Individualized Family Service Plan meeting. S/he is also the one you will call when you have problems, complaints, or scheduling difficulties. Find out your service coordinator's phone number right away and paste it promenantly on your fridge.
Creation of the Individualized Family Service Plan or IFSP
After the initial assessment, which as explained may actually be several assessments by various specialists, most states mandate a period of time by which your appointed service coordinator must meet with you to create the Individualized Family Service Plan. At the IFSP meeting, you will find out what services your child qualifies for and who will provide them.
The service coordinator, the professionals who did the original assessment(s), and representatives from the different companies that will provide the therapy should be in attendance at the IFSP meeting, along with both parents. It may be difficult to schedule a meeting that all of these people can attend, but don't let that become an excuse to delay the meeting. The faster you get the IFSP meeting done, the faster services can begin. If scheduling is a big problem, you can agree to not have various parties attend. This isn't ideal, but if you can't find a date that agrees with everyone, you may have to compromise somewhere. We had some of the original assessment professionals join the meeting by phone.
Negotiating at the Individualized Family Service Plan Meeting
The IFSP meeting is kind of a negotiation. For example, if your child is entitled to physical therapy, you then negotiate how many times a week. The coordinator may say, "We are prepared to offer you one hour a week." If you know your child needs more, bargain. And bargain hard. It is very difficult to add hours or services after the IFSP meeting.
This is why it is helpful to have the original assessment professionals in attendance. If the person who assessed your child is there, and s/he feels the child needs more than one hour a week, she can speak up for your child, too. But ultimately it is up to you. You need to insist that your child receives the services he is entitled to.
The maximum entitlements vary from state to state. Do the research in advance so you are not intimidated by the service coordinator. If you know your child is entitled to up to 5 hours per week of physical therapy, for example, and you know your child really needs one session per day, you will be less likely to cave in to the pressure when the service coordinator tells you that he doesn't have the resources or doesn't see the need for that many hours.
Be sure to go into the IFSP meeting armed to do battle for your child and prepared with knowledge of the laws and options in your state. If you can, try to find a parent advocacy group in your state and call them in advance to make sure you are thoroughly versed. Learn from other parents who have been there before.
Of course I am not generalizing about all service coordinators or all EI programs, but the business side of EI is a reality: You want what your child needs - the state wants to spend as little money as possible. You need to be as prepared and educated for this meeting as possible. You should go into the meeting not only with knowledge of what your child is entitled to and what you insist your child needs, but also with a few things you can compromise on if you have to. This will give you leverage for the things you can't or don't want to budge on.
Your Official EI Start Date
After the Individualized Family Service Plan is complete, services are mandated to begin within a set period of time. If they don't, you are entitled to make-up sessions. Again, scheduling problems can cause delays. Be proactive!
If you don't want a service you are offered, you can decline it without effecting other services you do want. In other words, you are in control. Therapies must be provided in the most natural setting possible. Usually this is your home. Even physical and occupational therapy is done at home. If a type of therapy cannot be provided at home, the state must explain why. Some children will benefit from therapy that can only be provided at a center, a hospital, a special nursery school, or other facility. You have a right to inspect these locations first and to attend with your child, at least in the beginning until he is used to the place and used to his therapist or instructor.
• How Therapies are Provided
Usually the state contracts with a variety of companies that provide the services your child needs. You may be dealing with 5 or more companies at once! One company will send over a speech therapist. Another company will send over the develomental intervention therapist. Another company will send in the occupational therapist. The more services you need, the longer the list. Be sure to write down the name of each company, the contact phone number, and what that company is providing, and then tape this sheet next to your phone. Children get sick, fall asleep, can't concentrate because they are teething, etc. You need to be able to call providers promptly when you have to cancel or reschedule.
If the company sends you a therapist you don't like, who is insensitive to your child, or who doesn't seem to know what s/he is doing, call the company and ask them to send a different therapist. Naturally, they will want to know why you didn't like the first therapist. If they tell you that they don't have anyone else to send, it is up to you whether you want to wait and delay therapy until a new therapist is available, stick it out with the old one until a new one is available, or fight with your service coordinator to switch providers. You may also bargain with the service provider and take less hours with a new therapist whose schedule may open up for more hours in the future. Whatever you do, do not give up your total hours - hours are very hard to reclaim later on.
For example, if your child is entitled to 10 hours per week of developmental intervention (behavioral therapy), and you don't like the therapist who was sent to your house, you have the right to wait for a new therapist, take 5 hours from a new therapist until her schedule opens up, switch providers - but don't give up those 10 hours - otherwise later on you will have to prove to the state why you need the hours back.
I can tell you now you will become an adept phone warrior. Keep your cool, be persistant, and fight for what your child needs as politely as possible. Don't be intimidated by service providers who say they don't have any other therapists or your service coordinator who says that changing providers would be difficult or impossible. You have the right to voice your dissatisfaction, to try different therapists, or to switch providers if necessary.
• Know Your Rights
You have rights as a parent receiving Early Intervention services and your child has rights too. Early Intervention is considered a benefit to society as a whole because it increases the functioning of special needs children and their family members. Do not be intimidated by the process or by people who may criticize you and your family. Every child has the right to the medical, psychological, and therapeutic services he needs, and every family has the right to the services they need to function at the best possible level in the community and in the society at large.
You have the right to complain about a service provider or a specific therapist. You have the right to switch service coordinators if yours doesn't respond to your needs, threatens you, won't help you, doesn't return your calls, or refuses to provide you with requested records and information. You know your child better than anyone, so if your child needs more therapy, different therapy, a new therapist, or ancillary services like transportation or medical devices such as a wheelchair, speak up.
Your state may also provide services to your family, such as social workers, respite care so you can get a break, services for brothers and sisters of special needs children, parent support groups, and family counseling. Families with special needs children have much higher rates of divorce, suicide, and depression. Now is not the time to be shy or to be ashamed. You have the right to be heard, to get help, and to be part of the community to the greatest extent possible.
• What to Expect as Therapy Progresses
Each therapist will keep notes on every session with your child. You should receive a copy. File them in a binder so you can look over them periodically. Do you see progression? Do see any problems?
All the therapists sent by the various service providers are mandated to meet with the family a certain number of times. These meetings are important. Goals for your child are reviewed and adapted at these meetings. You also have a chance to share any concerns, ask questions, and request further assessments or evaluations. The therapists should also be teaching you what you can do with your child to enhance or compliment his therapy.
Every three or six months (it varies by state), the Individual Family Service Plan is reviewed and adapted as necessary. Be sure you are comfortable with any proposed changes in what your child is being offered. As your child matures, special classes, special needs nursery schools, or programs at centers may become more important and may compliment home therapy or replace it all together. Ask if Early Intervention has services or suggestions to help your child cope with any imminent changes.
Tip: Buy the largest 3-ring binder you can find. Keep copies of the notes from the child's therapy sessions in it. Also take notes at all meetings and keep a running log of phone calls you make. All the information will be on hand in one place. You'll be able to look over your child's progress and you'll also have an on-going document of who said what and when.
• Transition Planning As Your Child Approaches His Third Birthday
As your child approaches his third birthday, the team must also meet to create a transition plan. At age three, your child's education will be provided by the public school system, which will do its own assessment of the child before he enters programming.
Again your best bet is to contact a parent advocacy group and find out from other parents well before your child's third birthday what options the public school system can offer your family. This will give you time to visit schools and programs, to think about what might work for your child, and to consult with profressionals if you need to.
• Special Information for Parents of Autistic Children In Early Intervention
Your autistic child will probably be offered Applied Behavioral Analysis (ABA) therapy. An ABA therapist will either come to your home and work with your child one-on-one, or your child will go to a center or special nursery school.
Sometimes Early Intervention will give your child up to 40 hours of ABA therapy a week. In some states, you provide the ABA therapist and then you are reimbursed by the state. Ask parents in local support groups which professionals they have worked with successfully. Also, always check the therapist's credentials. The therapist should be certified to provide ABA therapy. We went through a string of therapists until we found the right match for each of our daughters. Don't give up. We eventually found a great ABA therapist for our youngest twin, who really benefited from the therapy she received.
If you ask Early Intervention for other types of therapies for autism besides ABA, such as Floortime, DIR, or Miller Method, you will probably have to fight hard to explain why. Persistence may pay off. For example, we kept asking our service provider to find us a therapist who had training or at least interest in Floortime, and believe it or not, they found someone. She was certified in ABA, but was curious about Floortime and had attended workshops about the method. She had just the right mix for our other daughter, who needed her special touch, and they bonded thoroughly. Our daughter blossomed under her care.
If the service companies you are working with or your service coordinator don't know about any therapies other than ABA, you can ask the therapists directly. They may be able to accommodate your requests. Some are young college students willing to learn and to try new ways of reaching a child who isn't responding to traditional therapies.
Sometimes Early Intervention will allow you to substitute a professional from a certified and credentialed alternative provider and then reimburse you for the service, but this is the exception. While it can't hurt to ask, you will probably have to find, provide, and pay for anything other than ABA, physical therapy, occupational therapy, speech therapy, ancillary medical support, and assistive technology by yourself.
Best and Most Unusual Resources
Books for Children
Books for Adults
Favorite Toys
Favorite Products
Unusual & Interesting
• Books For Children
I Am Utterly Unique - Celebrating the Strengths of Children with Asperger Syndrome & High-Functioning Autism
by Elaine Marie Larson
A wonderfully positive book with fun illustrations!
• Books for Parents
Thinking in Pictures and Other Reports from My Life with Autism
by Temple Grandin
Good for older children too, this book explains how Autistic people think and process the world.
• Favorite Toys
Coming Soon!
• Favorite Products
AERO Ear Plugs - The best ear plugs in the world - and very comfortable. Warning/disclaimer: Please follow manufacturer's guidelines for usage and age restrictions and always consult your medical doctor or your child's medical doctor about auditory issues. Do a google search to find a supplier.
More coming soon!
• Unusual and Interesting
Surfers Healing: Surfing for Children on the Spectrum
Information for Parents of Autistic Children
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