HELP FOR PARENTS
Whether you suspect that your child may have an Autism Spectrum Disorder or if he or she already has been diagnosed, understanding your child’s educational, medical and therapeutic needs is critical. And this can be daunting for any parent, especially those of newly diagnosed children! We are providing an overview for you here to get you started. Contact us if you have questions or are looking for additional resources. We are fortunate to have among our board members authors of books about ASD, which provide a great starting point for more in depth reading about ASD. Ken Siri has written 101 Tips for the Parents of Boys with Autism: The Most Crucial Things You Need to Know About Diagnosis, Doctors, Schools, Taxes, Vaccinations, Babysitters, Treatment, Food, Self-Care, and More and Cutting Edge Therapies For Autism (with Tony Lyons) and Kim Mack Rosenberg has written the recently published Parent’s Autism Sourcebook. For parents of girls, check out 101 Tips for the Parents of Girls with Autism: The Most Crucial Things You Need to Know About Diagnosis, Doctors, Schools, Taxes, Vaccinations, Babysitters, Treatment, Food, Self-Care, and More by Tony Lyons and Kim Stagliano. We will be adding more book resources over time, but we are proud of our work and think that these books are helpful to parents anywhere along their journey.
Autism Spectrum Disorder is just that – a spectrum. Each person with ASD is unique. There used to be several diagnostic categories such as autism, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), and Asperger’s Syndrome, but recently the diagnostic criteria changed and these formerly independent but related diagnoses now are all included under the umbrella of ASD. ASD formerly was considered a pyschological/mental health condition or a “developmental disability”. However, as the whole body impact of ASD becomes more well-understood, it is being described as a is a neurobiological disease, with many associated physical issues and symptoms.
Each person with ASD is a unique constellation of strengths and weaknesses. People sometimes use terms such as “high functioning” or “low functioning” to describe people with autism. These broad categories can be misleading. A very verbal person with autism may communicate at a high level but have significant and debilitating issues with aggression or impulsivity. A person who cannot speak may have an extraordinarily high IQ and be gifted academically. High and low functioning generalize where it is hard to generalize because of “splinter” skills that many people with ASD exhibit – strengths in one area and challenges in others.So what can we say generally about ASD? ASD is a disease that, to varying degrees, impairs a person’s ability to communicate and interact socially and impacts their behavior to a degree that they are distinguishable from “neurotypical” peers. People with autism have greater difficulty learning from the natural environment than do their neurotypical peers. Examples of social impairments may include:
While some people with ASD may appear to have little interest in the world or people around them, evidence – including communication via assistive technology from non-verbal individuals – is now demonstrating that people with ASD are much more connected to the world around them than previously believed despite perhaps a disconnected appearance.
While verbal skills can vary a great deal in people with ASD, a significant percentage of individuals are with ASD are non-verbal or have limited verbal skills. Assistive technology – such as the iPad – can help these individuals finally be able to communicate effectively and, in some instances, may be a gateway to verbal communication. Some common examples of communication issues include:
Examples of behaviors often seen in individuals with ASD include:
Because abstract ideas and thoughts may be challenging for people with autism, many people with autism are drawn to more concrete academic subjects such as math. It is also commonly reported that individuals with autism often fixate on trains, transportation schedule and maps. However, many people with autism are fixated on other things as well – just like everyone else, each person with ASD is unique and has his or her own interests. While some people with autism are able to live independently and work, many people with autism require lifelong care.
Some children seem to have ASD from birth. However, many appear to develop normally up to sometime between 12 to 30 months and then lose abilities such as language and social skills, and develop behaviors such as stimming and perseverative behaviors. This is known as regressive autism. A smaller subset may regress at an even later age.
The most current thinking suggests that autism has environmental and genetic components. In other words, people may have a genetic predisposition and an environmental trigger may result in them developing autism. The old refrigerator mother theory of autism causation has been debunked and likewise the theory of purely genetic autism causation is faltering. A number of studies of twins and siblings suggests that genetics plays a less significant role in autism causation as a general matter than previously believed. For example, a 2011 twins study, showed that the heritability rate for ASD was under 40%. Moreover, the autism prevalence rate has skyrocketed in the past several years and has reached epidemic proportions. There has never been a genetically-based epidemic in recorded human history (which may be why advocates of a genetic cause for autism argue that there is also no epidemic, despite all indications to the contrary).
Many objective researchers without financial ties to pharmaceutical companies and the federal health bureaucracies, believe that the evidence indicates that genetically susceptible children acquire autism through early exposure to some insult from the environment (including prenatal exposures in utero) such as viruses, heavy metals (such as mercury), or vaccines for some individuals. The total load theory of environmental exposure suggests that each of us has a tipping point at which our body cannot process the toxins it takes in, tipping us into poor health. Some people efficiently and effectively process toxins and they may be less susceptible to environmental factors. Others have impaired detoxification pathways and may “tip” sooner and/or have more serious health issues. For some the health effects may be allergies, asthma, autoimmune diseases, and others. For some, the outcome may be autism.
Autism is an out-of-control epidemic in the United States. Twenty-five years ago autism was an extremely rare condition. Now it is the leading disabling disease of children in the United States. In the 1980s the autism prevalence rate was 1 in 2,500 children, now that rate is 1 in 68 and and astonishing 1 in 42 for boys. Moreover, the current rate is not even that current. The 1 in 68 rate announced by the U.S. Centers for Disease Control in early 2014 is based on a 2010 survey by the CDC of records for 8 year olds. So that means that by the time the CDC released their 2014 prevalence rate,the children whose school and medical records it had reviewed already were 12 years old! While better awareness and some diagnostic and other factors may account for some role in this increase, these factors cannot come close to explaining the huge increases from 1 in 2,500 to 1 in 68. Moreover, anecdotal evidence from special education teachers and others who likely would have had contacted with children with ASD report that these children were not in their classrooms thirty years ago. It is incredible given the challenges in speech, socialization and behavior seen in many individuals with ASD, that parents, teachers, therapists, and doctors all simply “missed” these children and suddenly have gotten better at recognizing the many obvious symptoms many children with ASD exhibit.
We refer again to the books we mentioned above, which have more complete information on treatment options available. There are many educational, therapeutic, medical and nutritional interventions that families find helpful. Every child is unique and the combination of therapies and interventions that works best for your child may differ from those benefiting another child. For parents, this means lots of homework on what is available. But the good news is that there are many options to explore. It takes time to find what might help your child with ASD that also fits within your family budget, works for the social-emotional health of the family (parents and siblings too) and works for your lifestyle.
Meeting the educational needs of children with autism is challenging. Many children require small classroomswith significant supports or 1:1 instruction. Others can do well in slightly larger classrooms (with or without support) and some children are mainstreamed (again with differing support needs). Many children with ASD receive speech therapy, occupational therapy (including sensory integration therapy), and some require physical therapy and counseling as well. But beyond these basics, there are many other therapeutic interventions that may benefit individuals with ASD. For many of these interventions, adults as well as children can benefit. Please note that NAA NYM does not endorse any particular intervention or practioner/provider – only you can determine the right fits for your child and family!
Further as the numbers of children with ASD continue to grow and as these children become adults, there also is an ever-expanding need for vocational, educational and other opportunities for them. Some adults with autism may be able to attend colleges or college-like living experiences, others flourish in vocational training, and many others may require more significant supports and structured opportunities to reach their fullest potential. Adult issues is an area of growing need and concern for NAA NYM and the entire autism community.
Some examples of educational and therapeutic interventions include (this is a long list, so get ready):
Autism impairs many chemical processes throughout the body and doctors and other healthcare practitioners are finding that many people with autism have medical conditions that may be causing or contributing to symptoms of autism or poor health and when these conditions are treated, patients improve. Some may see symptoms of autism improve or resolve, and some may lose their diagnosis. There is no wonder drug to “cure” autism, but there are many treatments available. Some conditions that may be treated include:
There is no one “autism diet” but there are several dietary approaches that have been used successfully by people with autism. Families may have to try one or more approaches or combine parts of various “diets” to find what works best for their loved one with ASD. If is is possible to work with a nutritionist or other practitioner well-versed in the needs of individuals with ASD, this can help you determine the best approach and tweak interventions to your individual needs.
Some nutritional interventions include:
There are many, many protocols used in treating conditions seen in individuals with autism and many different types of practitioners who treat our children. We urge you to work with practitioners with whom you feel comfortable, get recommendations from people you trust, but also ask the “tough questions” to make sure the treatments you are considering are right for your child and family – no protocol works for all patients and not every type of treatment is a right fit for every family. In the end, only you can decide what will potentially fit for you! Please note that NAA NYM does not endorse any particular treatment, protocol or practitioner.
Some medical, biomedical, and integrative treatments that have helped people with autism include:
