This newsletter is for your information only and is not a substitute for talking with your psychiatrist, medical doctor, and/or therapist.
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This Medical Memo focuses on the treatment, education, habilitation (therapies to enhance life skills to increase ability to function in society), and support services for people with Autistic Spectrum Disorders (ASD) and its near synonym Pervasive Developmental Disorder (PDD).
As in most conditions the prognosis or future prospects are often better with early diagnosis and treatment. However, the younger the age the harder to be sure about the diagnosis. Fortunately, screening tools are available which can be used in the pediatrician's or family practitioner's office, in schools and preschools, and in outreach agencies including Child Find available through your neighborhood public elementary school. These persons can refer or you can directly seek more in depth evaluation by a child psychiatrist, developmental pediatrician, pediatric neurologist, child psychologist, masters level therapist, speech and language therapist, occupational or physical therapist, etc. Depending on the signs and symptoms, family history, age, developmental level of the child, and other factors, developmental screening or evaluations may be followed up by blood or urine tests, chromosomal and gene testing, intellectual, learning, language and cognitive testing, an EEG or MRI, or other options.
See one basic simple early screening tool I've provided here in this Medical Memo.
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Autistic
Spectrum Disorder Screen Does your child enjoy being swung, bounced on your
knee, etc? Does your child take an interest in other children? Does your child like climbing on things, such as stairs? Does your child enjoy playing peek-a-boo/hide-and-seek? Does your child ever PRETEND, for example, to make a cup
of tea using a toy cup and teapot, or pretend other things? Does your child ever use his/her index finger to point, to
ASK for something? Does your child ever use his/her index finger to point, to
indicate INTEREST in something? Can your child play properly with small toys (e.g. cars or
bricks) without just mouthing, fiddling or dropping them? Does your child ever bring objects over to you (parent) to
SHOW you something? |
Before your child turns three he or she should enjoy being swung or bounced on your knee, show an interest in other children, like simple climbing, enjoy peek a boo, pretend, point to ask for something, point to indicate interest in things, play with small toys, and bring objects to show to you. If not, seek evaluation. There is another longer version called the M-CHAT. Fortunately, because early intervention often saves much cost, time, and money the Arizona
Department of Developmental Disabilities (DDD) often provides free or low cost intervention services for infants to (at least) 6 year olds with physical, language, behavioral or other developmental delays even without any type of PDD label or diagnosis. DDD in combination with your local school district via
Child Find will provide services including specialized preschool beginning as young as your child's 2nd birthday. After roughly the age of 6, youth and adults must have at least one of four qualifying conditions
and severe impairment in at least 3 of the 7 "domains of function" to continue to qualify for DDD services. The 4 qualifying conditions are Autism (diagnosis code 299.0;
not Asperger's, NLD, ASD, or PDD), Cerebral Palsy, Epilepsy, or Mental Retardation. The domains of function include self care, receptive and expressive language, learning, mobility, self direction, capacity for independent living, and economic self sufficiency.
Because these conditions deeply affect a broad range of growth and development for many years (ie, pervasive), if not lifelong, a broad, even confusing, range of interventions have and are being developed and offered. Many even common mainstream techniques have not been well studied or proven effective. Because these conditions are not well understood and mainstream treatments are often only partially helpful many options evolve to try to fill the void.
So what interventions are currently believed to have the best potential benefit and are most cost effective?
Early specialized comprehensive social communication education, including but not limited to academics, is central. Structured teaching (eg TEACCH) in and outside of school including at home and in the community of social interaction, social communication, and pragmatic social language skills (eg, TAFA and the UA Speech and Language program in Tucson; socialthinking.com) cannot be overemphasized beginning when the first signs and symptoms of Autism or its cousins appear. These crucial language and interaction skills teaching overlap with behavior therapy oriented interventions known as "Functional Behavioral Analysis" and the more relationship building techniques of Dr. Greenspan's "Floor Time" approach known as Developmental, Individual difference, Relationship based (DIR) techniques. Speech and language approaches can include "total communication" using visual enhancements like sign language, gestures, pictures (eg, PECS), and technology like modified computers to facilitate language communication to "speak" such as "Aug-Com" (augmentive communication) devices when language is severely delayed. Occupational and Physical Therapists have much to offer many PDD youth to help cooridination, muscle tone, dysgraphia (handwriting related delays) and especially the common Sensory Integration problems and sensitivities that can be overwhelming and which may even be at the core neurologically. Directly teaching and practicing social skills to overcome the failure to see, read, and grasp such basics of body language as eye contact, posture, personal space, common courtesy and the social niceties which are sometimes known as Dyssemia is advised (eg,
Teaching Your Child The Language Of Social Success in my website book
list). "Social Sories" are a written, read and drawing technique to teach social skills that takes advantage of the often relatively strong visual thinking of many people with PDDs to help them understand how, what, and why other people think, feel and behave as they do.
More classic psychotherapies tailored to the age and developmental needs of the youth can be helpful in providing needed support, guidance, and counseling to the child, parent, and siblings. The impact of PDDs on parents, siblings and others are often huge.
Medications do not get at the core underlying brain disorder in the Autism spectrum. Atypical antipsychotics like Risperidone (the only FDA approved medicine for Autism) come closest. This is a fairly "big gun" though potentially very helpful family of medicines. A wide range of other medicines described in my
medicine charts and other
Medical Memos are often at least partly helpful to target specific symptoms or behaviors that are common in PDDs like sleep problems, attention disorder, hyperactivity, irritability, seizures, some eating problems, some toileting problems, and especially various forms of anxiety including social anxiety, panic or obsessive and compulsive patterns.
A wide range of biologic and non biologic alternative and complementary treatments have been or are being tried based on some plausible and sometimes implausible theories. Some have not panned out or are costly, time consuming, or even possibly detrimental. These include yeast as cause of PDDs treated by nystatin or a "yeast free diet" and supplements, secretin as a gastro-intestinal modulator, vaccines as cause especially including thimerosal's mercury, dental fillings made from an amalgram containing mercury as cause, immunotherapy, chelation for mercury and other heavy medals, and "facilitated communication" etc. Others therapies which are not well documented as helpful but are likely not harmful other than possibly the time, energy, and cost include supplemental digestive enzymes, high dose or putative vitamins, other supplements, herbs, gluten-casein free diets, other special diets, auditory integration therapy, behavioral optometry, music therapy, fish or flax oil omega 3 or 6 supplements, craniosacral therapy, the Dore Method, bio or neurofeedback, etc. Many families I see do try various alternative treatments. I am always interested to hear of their experiences, some of which they find helpful.
Independence as contributing members of society; happy with self supporting jobs, hobbies, a family of their own, and a life of meaning or spirituality are big parts of what parents want for their kids. Some people with PDDs attain all of this and more; others achieve some but need supports; some need lengthy or lifelong supervision up to 24 hours a day. Guardianship (of which there are multiple levels), Social Security disability, and other public and private agencies may come into play for supervised living, work, insurance, ongoing skill building, and other assistance. With the growing numbers of older teens and young adults with PDDs needing enhanced skills toward independent living new treatment, education, and life skills models are needed. One such idea is that of Chapel Haven (chapelhaven.org) which has a new model program here in Tucson.
Overall, higher tested intelligence and especially better social communication including a willingness to go along with social niceties that may make no sense to the person with PDD is associated with a better prognosis. Temple Grandin, a female University professor in animal science with ASD talks eloquently about this in a number of her books.
Remember, the best predictor of better outcome is the development of social communication which is also known as pragmatic social language skills. Persevering with these supports and treatments typically optimize outcome. Along with anything else you try, pursue this area vigorously and
persistently.
I strongly encourage reading the section on all Pervasive Developmental Disorders in DSM-IV-TR for one of the best descriptions anywhere of PDDs. I personally found Oliver Sacks' chapter entitled An Anthropologist On Mars in his book of the same name to be the best at capturing the "qualitative " features of Autism. He writes about the overall condition and about Temple Grandin who has written several enlightening books of her own. The American Academy of Pediatrics (AAP) published 2 excellent comprehensive companion articles in their journal Pediatrics in 11/07. The American Academy of Child and Adolescent Psychiatry (AACAP)'s Practice Parameter on evaluating and treating Autism and related conditions and similar writings from the American Psychological Association (APA) are also worth reading. Please see the
mental health links section of my website for more.