Christina Adams, M.F.A. Autism, Early Intervention and Recovery: Guidelines for Help and Hope

Embedded Scribd iPaper - Requires Javascript and Flash Player
Christina Adams, M.F.A. Autism, Early Intervention and Recovery: Guidelines for Help and Hope
Christina Adams, M.F.A., is the author of A Real Boy: A True Story of Autism, Early Intervention and Recovery (Penguin 2005). Her work has appeared on National Public Radio’s Day to Day and in Los Angeles Times Magazine, The Los Angeles Times, and Brain Child Magazine. A Real Boy has been featured in The Washington Post, CHILD Magazine, Booklist, Publishers Weekly, The Tampa Tribune, and others. It was nominated for awards from the Autism Society of America, Books for a Better Life, The Ron Ridenhour Foundation, and the Library of Virginia. Born in Washington, D.C., Christina served as editor of The Pentagram (the newspaper of the Pentagon), and worked in communications and public relations for the federal government and aerospace and insurance industries. Christina speaks nationally and conducts workshops about autism and writing. Medical publications she has edited include “The Cornerstone Method: IQ Rise Found in Treated PDD children” with psychiatrist Dr. Gilbert Kliman. Her website is
www.christinaadamswriter.com
Introduction: My son was a normal baby whose first word came at nine months. He was friendly, sociable, attached and quite advanced in many ways. But there were early warnings signs that he was susceptible to dietary, immune, allergy and motor problems. Although he was pronounced “advanced” at the age of fifteen months by his pediatrician, after his fourth DPT shot, he regressed and lost language, social skills and attention. He became hyperactive and aggressive. Later, his language returned as echolalia. He was kicked out of two preschools within weeks. Diagnosed at nearly 3, he began dietary, speech, ABA and language-building therapies immediately. His program was: 35-40 hours per week of in-home Applied Behavioral Analysis. 3 hours per week of in-home one-to-one speech therapy. 2 hours per week of clinic-based OT (occupational therapy). Approximately 1 hour per day of Cornerstone therapy (varied from day to day). Around-the-clock language-building, immersion and stimulation (by myself and others). Parent-Prompted Participatory story-telling (method I developed). Gluten-free/casein-free/low sugar diet.
Natural supplements. Anti-viral medications. Anti-fungal medications. Anti-anxiety medications. ABA therapist/aide to assist him in typical preschool when ready. Field trips and social skill outings with parents and ABA therapists. After 18 months, my son passed a ½ -hour kindergarten readiness test undetected. By nearly age five, was thought misdiagnosed by a doctor. By age seven, his speech tested at very high age levels, superior in many areas. He is considered a gifted child by his school in second grade. Reading, math, abstract concepts and other academics are at advanced levels. His handwriting is very good. Auditory processing greatly improved. Does homework independently. Must still be on medications and diet. Cannot tolerate dairy; can handle up to 3-4 grams of sugar in select food servings after being able to consume only 1-3 grams per serving a year ago. Shops for his own foods, reads labels and manages his own food consumption when in restaurants and with friends. Has mild attention issues at times, while in other activities, he is highly skilled and very independent. He is very sociable, emotionally attuned, sensitive and caring. He is adventurous and charming, and usually makes friends wherever he goes. 1. Early signs of autism spectrum disorders: identifying them can help your child improve -Many children do not fit an “autism stereotype” as far as stimming, being nonverbal and nonsocial, etc. The main aspects of being on the spectrum are “differences;” by this I mean there are different or unusual qualities to a child’s (or adult’s) communication and socialization abilities. They may also be overly focused or have or unusual interests. Thomas the Tank Engine, bathrooms, certain toys, household or mechanical objects, repetitive and limited play, lack of social smile and attention (even though many kids do have a social smile and reasonable attention in certain situations). -Subtle health problems are often present from birth or later. Eczema, thrush, picky eating, reflux, gastrointestinal problems ranging from loose bowels to constipation, rashes, early food allergies, limited eating and eating problems, failure to thrive, ear infections. These can be treated biomedically with diet, medications, supplements and feeding programs when carried out under the care of a doctor specializing in autism.
-Take a look at the subtle differences about any baby or toddler and write them down. Note developmental milestones and any slight variances in development, either positive or negative. For example: The “tilt test.” A baby can be held upright at the waist, away from the parents’ bodies, then the parents can slowly tilt the baby by 45 degrees to the right and left. By eight months of age, most babies will try to keep their heads directly upright. However, a child with AS usually keeps his or her head aligned with the body, so that it tilts from side to side during the test. This can indicate a movement disorder that shows risk for autism. Late walking (even just a couple of months), odd crawling, late speech or gestures, being a “too good” or too fretful baby, are often signs of problems; Reflexes (such a startle reflex that stays with the child past the normal developmental period) that do not leave or never appear, as well as “posturing” (abnormal-looking positioning of the hands or lower body when walking, etc.) can be signs of developmental problems. “W” sitting (knees turned in and flat on the floor with arch downward and feet flat behind) is often a sign of motor and trunk weakness. The organization First Signs lists more noticeable things to watch for. But various subtle biomedical and neurological signs like the ones I list are just emerging in the scientific literature and most professionals are not aware of them. This type of information can often be found on the Shafer Autism Report as it emerges. -Closely examining the early features of your child can lead to the most effective therapeutic, medical or dietary paths. Remember these early deficits are quite entrenched and should be targeted immediately. Almost all kids have neurological weaknesses that could benefit from OT, PT or vision help. Plus ABA can work on this. Speech for all, even highly verbal kids, is imperative because speech teaches social skills no matter what level. Even if language is great or superior, often prosody, pragmatics, turn-taking, idioms and overall politeness may need work. Early pre-natal and post-birth health problems can help some parents figure out if the child’s deficits are hereditary, genetic, neurological, birth trauma, immune system, nutrition or allergy-based. The University of Nebraska has an excellent 4-tier workup plan that can determine cause of autism in up to 40 or more percent of cases. Dr. Michael Goldberg in Tarzana, CA, can rule out which children show immune-system weaknesses with testing.
Various geneticists can examine genetic issues, especially if you plan to have other children. This kind of targeted info enables you to find the right treatments without wasting as much time and money. 2. The experience of diagnosis—how to move forward with what you learn about your child. -There is enormous pain in finding out your child is on the autism spectrum. This pain is going to have an effect on you and your family. It is nothing to be ashamed of, it’s just natural. It is best to understand this going into an autism diagnosis, so that the pain can be expected and managed, rather than allowing it to move along at will and possibly wrecking your life in the process. It is amazing what good effects can come out of such a traumatic event if effort is put into the situation by both parents, not just the mother. - Find a very competent, experienced therapist or psychologist who treats both kids and adults with ASD. He or she can help a family see the effects of ASD on the family and marriage. This sort of mutual understanding can make everything go better and possibly prevent a family disaster or breakup in the years to come. -Reach out to other parents. -Attend support groups. If it’s possible that either or both parents are on the autism spectrum, read books about marriage and relationships (Asperger’s in Love, Asperger’s Syndrome and Long-Term Relationships), attend support groups and seek out a marital counselor familiar with Asperger’s adults. 3. Reaching out--finding the right services for your child (from parental, legal, and community sources) The best information comes from experienced families. Find families and support groups who know your local school, Regional Center, doctors, therapists, special education attorneys, etc. People who are not parents often have financial, personal or other interests at stake and may not be able to provide impartial or empathetic information. For instance, families of “typical” kids sometimes become very resentful when they find out how much an ABA program costs the local school district. Some medical or school authorities have a vested interest in telling you which programs or therapies to use and are not honest about your child’s true needs for ABA or other services. There are many benefits to making your child a Regional Center client right away, including early therapies. But it also ensures their long-term eligibility in the face of tightening budgets. In case you are going to need their services in the long-term future, it’s best to get signed up.
-
-
-
-
-
-
Should you get a special ed attorney and if so, why and when? It does seem that most people will need one eventually if they disagree with their school. Schools are more inflexible these days and if a child needs ABA and other services, many parents who want that program will have to hire counsel. Positives to bringing on an attorney or advocate: If you bring one early in the process, the relationship between parent and school can stay more cordial because the attorney offers a conduit for negative communication, which takes the burden off the parent. Also, legally, your first IEP tends to be the most important. An attorney knows about resources and programs that you may not. They can also refer you to an outside psychologist for a complete evaluation of the child, as well as other service providers, and get those services approved and paid for. Often you can get far more services by hiring an attorney up-front one time than you can get in a lifetime of battling on your own. If affordable, go at least two conference in the first three years. Some good ones are local or in LA, others are Autism One (www.autismone.org) in Chicago, maybe an ASA National or local regional conferences. Also, in California, go to TACA meetings as they report from Autism One, DAN! Conferences and other gatherings (www.tacanow.com). They also feature free speakers on a monthly basis. Just learn what’s available in your area. Start your own meet-up group, no matter how casual, if nothing else is available. TACA will assign you an autism intervention mentor, as will Autism One. Most mentors live in Southern California.
4. Creating a total language and learning environment (including ABA, speech, “giving language” and parentprompted participatory story-telling). -ABA creates speech, social skills, empathy and shapes desired behavior. Teaches life skills. Most kids do better with it, a very few outwardly do not. Some do extremely well and recover normal functioning. New debate about 25 “eclectic” intervention hours vs. ABA…new study showed once again that eclectic groups of kids did not improve and full-time ABA kids did. -Speech: 3 hours per week is great. For autism and apraxia, the “gold standard” is 5, but that’s tough to get and run. Prompt and elicit speech (if child is verbal) during the daily environment. Substitute alternative means of communication if child is nonverbal, such as PECS or augmentative communication device, as these are believed to help the brain develop language and thought capacities. -Give language whenever possible and have them repeat it back.
-Flood them in good language and good-quality visuals, like art, welldone kids’ books, pictures, etc. Carefully manage the time spent on videos or computer video games, and use them as positive reinforcers (and for when you absolutely need a break.) -Tell bed-time stories at night in the dark, as the visual distractions are low and you can get very good attention and often language from them. 5. Diet—your first-line intervention. Can be worth $100K in ABA if it works. Almost all kids (and many adults) have dietary issues. Dairy products including casein and related items are the most common. Wheat and gluten are also common irritants that can exacerbate autistic behavior. Other irritants are soy, corn, sugar, dyes, colors, artificial sweeteners, nitrates, yeast, corn syrup, chocolate, fruits, etc. Things to do: increase protein intake (serve it first on the plate, before carbohydrates are served). Cut back on carbs. Avoid whole grains, sugars and cut back on juice. Eliminate dairy first, then try other items such as gluten, etc. Investigate other diets as well. Find an autism parent to take you shopping for the first few times. Conduct skin allergy testing with an allergist who is familiar with autism. Find an autism doctor. Purchase organic products and avoid tap water. Use a multi-vitamin and possibly a calcium powder supplement if the autism doctor advises them. 6. Medical interventions—how testing, supplements and medication can help. -Immune system findings, genetics and other findings are emerging daily. Genetic: several genes, not just one, may be at play in setting up autism spectrum disorders. This does not explain the rise in autism; many researchers conjecture that there cannot be a solely genetic epidemic unless environmental triggers are altering genes very quickly in young individuals. Environmental: Some researchers theorize that genetically vulnerable individuals, with family histories of food sensitivities and other allergic responses, often occurring in families with notable drive, focus or intelligence (notwithstanding their socioeconomic status), predispose the individual toward developing autism if negative environmental triggers occur. According to the Children’s Environmental Health Center at UC-Davis, the current estimate is that 5-15 specific genes in a child place him or her at risk for autism. There are hot spots on every chromosome and it is a very complicated disorder. There is very little
attention to scientifically sound strategies on how genetic issues impact environmental exposure risk. There are many potentially toxic substances that have been increasingly found to cause early dysfunction in the immune system, developing brain, sexual development, and learning and socialization. Subjects of scientific inquiry include industrial chemicals (perchlorate, phthalates, arsenic, mercury and other heavy metals), pesticides, indoor and outdoor pollution, and off-gassing from household products. Additionally, ingredients found in vaccines such as thimerosal (a mercury-based preservative) and other vaccine contents, as well as the type, number and early frequency of vaccines in the recommended childhood vaccine schedule, are also being examined. Antibiotic usage is also being analyzed. It’s also postulated that certain environmental factors may be affecting boys more significantly than girls, as they constitute the majority of autism diagnoses. More scientists are becoming interested in autism. Not just toxicology but other fields. A notable neurobiologist who is working on auditory cortex had not thought about environmental exposure, but another researcher told him that some chemical compounds called PCBs can affect the auditory cortex. This could explain why the hearing of a child can be fine but auditory processing is scrambled. They collaborated and wrote a paper on it. What compounds are being examined? PCB (polychlorinated biphenyls) is the name of a chemical family of 209 chemical compounds which are toxic and accumulate in animal tissues. They do not disappear from the environment although they’ve been banned since 1979. This is a high-priority study. Flame retardants –there is direct evidence they are accumulating in moms and children. A family in Oakland tested at a reliable lab for (brominated diphenyl ether) BDE-47 levels had results like this: dad was lowest in toxicity, then mom was higher, then 10-year-old next highest, then toddler had three times the amount of the oldest sib. There are about 209 of these compounds and it seems they are concentrating in the most vulnerable children. Perchlorate (rocket fuel component) is in most water, lettuce and breast milk in California. These chemical stressors are driving a new area of science: how DNA is modified through methalation reactions—epigenetics modifiers. These can be transmitted from parent to child. Vaccines are made in egg and ova mixes which can affect people sensitive to these substances. Not to mention thimerosal, aluminum, etc. Add this issue to a growing list of environmental exposures. There
is a real risk: some scientists conjecture that five vaccinations for a child may be fine but 30 are too many. Risk factors for families: doctors need to take careful and detailed family histories. Timothy syndrome—single mutation in a calcium channel gene. In this group, the incidence of kids with this mutation was high--70% of this small study group had autism. Study came out of Boston. Kids with autism have a risk of sudden death. Some scientists wonder if it is linked to cardio factors and immune system responses? We are a critical junction. A scientist at the Children’s Health Center at UC- Davis says autism rates are not totally going down yet; that they normally fluctuate and that it’s too soon to tell yet if they are truly declining. There is exposure to organic mercury from various sources. There are many issues with phthalate esters exposure-from plastics— beginning in the ICU when babies are born. Triclosan may be bad—it is an anti-bacterial and anti-fungal. Analogous to the flame retardates except chlorinated and hydroxylated. From a scientist: Example of a substance thought initially to be safe but now considered questionable: An insecticide called Fipronil used for flea control was thought to be safer than the old ones but it may still be dangerous. This compound affects mammalian receptors. Betathree subunits form receptors, and autistic kids do not make enough of them. These receptors function just like the insect receptors affected by Fipronil. So this may harm kids’ existing receptors. Even in single-gene disorders, no one yet knows why some people with certain disorders have just one bad day per month while others have a bad year? Nothing known yet accounts for the phenotypic variability. This is why environment comes into play. Too long we have been focusing on cause and effect of genes only. Environment has a great impact on people, not just in autism but other emerging medical issues such as possibly Parkinson’s, Alzheimer’s, ALS, MS, pediatric cancers, allergies, etc. 7. What’s out there and possible? Chelation: studies I’ve seen so far do not support, but anecdotals are emerging, some good, some not. HBOT? IV glutathione? Supplements? Targeted immune-system products like IVIG and IMIG? What’s next?
Always keep hope. Progress, even with nonverbal kids, can be astounding. R’s story of hope. For more information on A Real Boy: A True Story of Autism, Early Intervention and Recovery, or to schedule a speaking date or presentation with Christina, please visit www.christinaadamswriter.com.