Developmental Needs in Children Growing up with Autism
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BIOMEDICAL
Mary Megson, MD is a developmental pediatrician who has worked in the field of pediatrics for more than twenty years. As a developmental specialist in pediatrics, she devotes her career to children with developmental issues, which include ADHD, ADD, autistic spectrum disorder, Asperger’s syndrome, and developmental delays. She is board certified by the American Board of Pediatrics, a Fellow of the American Academy of Pediatrics and a Member of the Society of Developmental Pediatrics. Dr. Megson travels all over the world speaking at international conferences.
Developmental Needs in Children Growing up with Autism
BY MarY Megson, MD
A
s a developmental pediatrician in practice for twenty-five years, I have watched a generation of young children with autism grow up. The oldest children, now adults, were treated for symptoms with speech therapy, occupational therapy, special education intervention, and medications when called for. Younger patients have benefitted from our growing knowledge of the biochemistry of autism and have been treated with multiple biomedical interventions based on the child’s individual genetic profile and environmental challenges. To simplify this, Dr. Sidney Baker says, “we take away what they have too much of, and add back what they need more of” to correct the individual child’s biochemistry. Other therapies include early intervention with one-on-one teaching, such as applied behavior analysis (ABA), and therapies like auditory integration training (AIT) and vision therapy. With these interventions, more and more children are improving. Some even lose the diagnosis. These children still have long-term, perhaps more subtle developmental, educational, and medical needs. Autistic children remain vulnerable due to their genetic profile and subsequent environmental exposures. As the children grow, they are often
expected to get more vaccines with less thimerosal but with aluminum and other preservatives in them. The children need protection against infectious disease without further harm. It is important to determine which vaccines the child had a poor response to. I look at family history to see if there is a multi-generational history of metal sensitivity, (e.g., can the mother wear inexpensive earrings or do they itch?). Avoiding further injection with metals, preservatives, and/or living viruses may be helpful. In elementary school, the children often have speech and language disorders. Language re-emerges in a predictable fashion when receptive understanding improves, and before expressive language emerges. During this stage, the children face greater frustration and tantrums increase. The child should have a safe, quite place to regroup when this happens. A bean bag chair in the corner of the classroom, with books available nearby, works nicely for this. Many children have abnormal sensory modulation that waxes and wanes. These children should be taken away to a quiet
place, and they need to be warned in advance of fire drills. If the cafeteria is too noisy, they should be allowed a quiet place to eat their lunch. If sensory issues intensify, the parent should take the child to a practitioner knowledgeable about biomedical management in autism. Often a yeast or Clostridia infection will exacerbate sound sensitivity because fungi and clostridia make proteins that block modulation of senses at the cellular level. One adolescent patient described loud sounds as feeling like a knife was being poked into her ear. These children should not be punished because of sensory issues. Giving the child sensory breaks with sensory integration therapy (spinning, running, jumping, etc.) or deep pressure on the skin and joint compressions all stimulate the release of acetylcholine, the “sit back, relax, focus, digest your food” neurotransmitter that takes the child out of “fight-or-flight” and allows them to regroup and focus. Learning disabilities often appear as the child moves through elementary school Three types of reading disorders are prominent: hyperlexia, dyslexia, and ADHD reading. The hyperlexic child reads beyond their level of comprehension, especially, if the topic is somewhat abstract. Reading comprehension goals should be included in the Individualized
ISSUE 31 2009
These children should not be punished because of sensory issues.
98
THE AUTISM FILE | www.autismfile.com
REPRINTED WITH PERMISSION OF THE AUTISM FILE
Education Plan (IEP) and a learning specialist should be consulted to help the child. Dyslexic children often have millisecond delays in auditory processing and/or rod dysfunction. Two published studies reveal poor rod function in 49% and 50% of autistic children. Due to poor rod function, many children have problems reading black on white print. For some, the letters move on the page. These children often read more easily on the computer with colored print. Color overlays are available at the Irlen Institute website that help some children. These children often lose their place on the page and struggle so hard to crack the code that they miss the content. With ADHD reading, children miss the content due to noise in the environment or their own internal thoughts. We have all experienced getting to the bottom of the page and not remembering what we read because our mind was elsewhere. Children with sensitive hearing often cannot weed out noise input as they try to read in class. Some need medications to improve auditory processing and focus. Many children with autism have far better visual attention than auditory attention. As they proceed through elementary school, visual reinforcers disappear by 3rd grade, and they are expected to sit and listen most of the day. The ADHD many autistic children demonstrate is internal distractibility with auditory processing problems. Anything that is taught and reinforced visually is easier for these children to grasp. Some are so visually distracted that they have to look away in order to listen. Every child with autism should have vision, hearing, and auditory processing evaluations on a routine basis. Some benefit from auditory trainers, sound cancelling headphones, and/or preferential seating. Once words and sentences emerge, the children often have a pragmatic semantic language disorder. Typically, speaking to adults or younger children emerges first, then language with peers. Outdoor interactive play (e.g., chase games on the playground) emerges before indoor interactive play. Social skills training should be included in IEP
ISSUE 31 2009
goals. Many school counselors do “lunch bunch” social skills training where a group of children discuss social scenarios over lunch. Social skills and self-esteem improve with participation in singleperson sports and activities such as karate, swimming, Scouts, and/or chess club with same-age peers. Typically, language emerges initially with a huge noun vocabulary, with clarity of speech before intent. Many children have prolonged word finding problems and pronominal reversal. They often lose both the topic at hand and social intent of the communication. Relationship Development Intervention (RDI) and social skills training is quite helpful with these children. At the elementary level, math problems include difficulty with word problems. Also, math is typically the subject most affected by errors of inattention. Put simply, the child “gets it” but makes careless mistakes. In a growing child, it is helpful to monitor math performance. These errors of inattention in math are often the first symptom of the medicine for ADHD not working anymore or of the child outgrowing the current dose. For many children with ADHD, math comprehension exceeds calculation. Treating ADHD in an autistic child is not simple. I always take a try-and-see approach with medications. I find some children respond well to the stimulants,
Strattera or clonidine. Medicines target the presenting symptoms. If high anxiety causes inattention, children may benefit from an SSRI medication. All drugs have benefits and side effects. I find zinc and methylcobalamin also quite helpful for attention problems. If the child needs medication, often lower doses for weight are more helpful without side effects. Middle school, teen years, and beyond Middle school presents its own challenges. Neurotypical (is there such a thing as a neurotypical adolescent?) children become increasingly aware of “what’s cool” in dress, slang, and projected lifestyle. Due to the adolescent’s surge in ability to comprehend more abstract concepts, children with autism seem more different for a few years in middle school. Bullies and the social hierarchy on the school buses are especially difficult to navigate. Parents may need to drive their autistic teens to school and report to the authorities if their child is bullied. By high school age, many maturing teenagers become kind and interested in other peoples’ differences. Many highfunctioning autistic spectrum disorder teens look more like their peers again. Although many children have improved by this age, keeping your IEP is crucial so that autistic innocent behaviors are not
Every child with autism should have vision, hearing, and auditory processing evaluations on a routine basis.
www.autismfile.com | THE AUTISM FILE 99
REPRINTED WITH PERMISSION OF THE AUTISM FILE
BIOMEDICAL
misinterpreted. Recently, a child I follow was shoved to hit a girl in the chest. The scenario that followed involved the police with sexual battery charges filed. The child had no IEP, so he required retesting to document autism before charges were dropped and social skills training was added to his then reinstated IEP. Out-of-school activities are helpful at this age, including visits to a gym, Scouting or participating on academic teams. Ongoing exercise helps with frustration. As a biomedical practitioner, I revisit supplement routines with families of adolescents. These need simplification at this point. The risk of seizures increases in adolescence. Some children become more aggressive, especially boys as testosterone increases. I find using medications with an antitestosterone effect helpful in teens with high testosterone (spironolactone, azole antifungal, and/or Lupron with precocious puberty). In children with high anxiety, oxytocin nasal spray can be quite helpful. Some children thank me because it helps them “get a friend” or “get invited to sleepovers for the first time.” SSRI medication and BuSpar can be helpful in some cases of high anxiety in teenagers. If symptoms worsen in a teenager, I reassess the child’s gut health, methylation support, and search for a cause of increased oxidative stress. Many teens rebel against special diets and long lists of supplements. I try to negotiate cooperation, simplify the list of supplements, and discuss personal environmental needs with the teenager. I explain why they should avoid certain foods, toxins, vaccines, dyes, and food additives. I explain the best diet as backto-God food.
All, even nonverbal, autistic adults should have a way to communicate, a job to support their independence and self-worth, and a safe supervised home-like environment in which to live and feel respected and valued.
They should choose foods around the perimeter of grocery stores, not the prepackaged, preserved choices in the middle. I explain the need for ongoing basic supplements such as vitamins and minerals, calcium, magnesium, zinc, B-complex, and methylcobalamin, to name a few. All children and teens need exposure to sunlight (>20 minutes a day with some exposed skin), exercise, and a healthy diet. For teenagers still unable to digest gluten and/or casein, I explain that staying off these foods will get rid of their feeling spacey, knowing that I get increased cooperation with the diet and use of enzymes. Older teens need to be monitored for poor endurance and/or exhaustion. Some teens with these symptoms benefit from Acetyl L-Carnitine 1000 mg/day and Coenzyme Q10 150 to 300 mg/ day. I look for and treat chronic viral infections. Hyperbaric treatments and oxytocin nasal spray help give the “with it” factor. Training in social skills remains helpful at this age to teach teen slang and innuendos. Parents should obtain power of attorney for their teenager at legal adult age. It is important to do this before a crisis arises. Recently, a patient could not be admitted to the hospital involuntarily because he was no longer a minor and his parents lacked power of attorney over him. Hopefully, by this age, the child has a case manager with Mental Health, Mental Retardation/Community Services Board. Parents should take advantage of all available benefits for the teen and adult child such as respite funds, in-home aides, financial support, and social/recreational programs for adolescents and adults. Many young adults with Asperger’s or high functioning autism spectrum disorder will successfully attend college en route to a successful career. Some students opt to live at home and attend a community college nearby. Others want to live on a college campus and experience campus life. Marshall University in West Virginia has such a model program with a positive behavioral support program. After being admitted to the university and the program, each student’s needs are assessed and appropriate academic, social, and life skills supports initiated. Hopefully, more such programs in the future will aid other students at this level. There are wonderful websites for young adults with Asperger’s syndrome and high functioning autism dealing with college resources. Other websites provide resources for dealing with adult sexuality. Many options are being created for alternative living arrangements for adults with autism. In the United States, many large institutions for adults with disabilities have closed down, and group homes, government-accredited and operated facilities and/or private facilities have opened in their place. With the current autism epidemic, there is a mushrooming need for adult housing. Other options include live-in caregivers and parent formed co-ops providing support service for adults with disabilities. Other communities have formed, with groups of group homes clustered in city and/or farm settings. Due to the enormity of this pending crisis in housing for adults with autism, parent groups should study this issue carefully and prepare different options for this population. All, even nonverbal, autistic adults should have a way to communicate, a job to support their independence and self-worth, and a safe supervised homelike environment in which to live and feel respected and valued. Let’s all work together now to assure this bright future for our affected children.
Parents should obtain power of attorney for their teenager at legal adult age. It is important to do this before a crisis arises.
100 THE AUTISM FILE | www.autismfile.com
REPRINTED WITH PERMISSION OF THE AUTISM FILE
ISSUE 31 2009
BIOMEDICAL
Mary Megson, MD is a developmental pediatrician who has worked in the field of pediatrics for more than twenty years. As a developmental specialist in pediatrics, she devotes her career to children with developmental issues, which include ADHD, ADD, autistic spectrum disorder, Asperger’s syndrome, and developmental delays. She is board certified by the American Board of Pediatrics, a Fellow of the American Academy of Pediatrics and a Member of the Society of Developmental Pediatrics. Dr. Megson travels all over the world speaking at international conferences.
Developmental Needs in Children Growing up with Autism
BY MarY Megson, MD
A
s a developmental pediatrician in practice for twenty-five years, I have watched a generation of young children with autism grow up. The oldest children, now adults, were treated for symptoms with speech therapy, occupational therapy, special education intervention, and medications when called for. Younger patients have benefitted from our growing knowledge of the biochemistry of autism and have been treated with multiple biomedical interventions based on the child’s individual genetic profile and environmental challenges. To simplify this, Dr. Sidney Baker says, “we take away what they have too much of, and add back what they need more of” to correct the individual child’s biochemistry. Other therapies include early intervention with one-on-one teaching, such as applied behavior analysis (ABA), and therapies like auditory integration training (AIT) and vision therapy. With these interventions, more and more children are improving. Some even lose the diagnosis. These children still have long-term, perhaps more subtle developmental, educational, and medical needs. Autistic children remain vulnerable due to their genetic profile and subsequent environmental exposures. As the children grow, they are often
expected to get more vaccines with less thimerosal but with aluminum and other preservatives in them. The children need protection against infectious disease without further harm. It is important to determine which vaccines the child had a poor response to. I look at family history to see if there is a multi-generational history of metal sensitivity, (e.g., can the mother wear inexpensive earrings or do they itch?). Avoiding further injection with metals, preservatives, and/or living viruses may be helpful. In elementary school, the children often have speech and language disorders. Language re-emerges in a predictable fashion when receptive understanding improves, and before expressive language emerges. During this stage, the children face greater frustration and tantrums increase. The child should have a safe, quite place to regroup when this happens. A bean bag chair in the corner of the classroom, with books available nearby, works nicely for this. Many children have abnormal sensory modulation that waxes and wanes. These children should be taken away to a quiet
place, and they need to be warned in advance of fire drills. If the cafeteria is too noisy, they should be allowed a quiet place to eat their lunch. If sensory issues intensify, the parent should take the child to a practitioner knowledgeable about biomedical management in autism. Often a yeast or Clostridia infection will exacerbate sound sensitivity because fungi and clostridia make proteins that block modulation of senses at the cellular level. One adolescent patient described loud sounds as feeling like a knife was being poked into her ear. These children should not be punished because of sensory issues. Giving the child sensory breaks with sensory integration therapy (spinning, running, jumping, etc.) or deep pressure on the skin and joint compressions all stimulate the release of acetylcholine, the “sit back, relax, focus, digest your food” neurotransmitter that takes the child out of “fight-or-flight” and allows them to regroup and focus. Learning disabilities often appear as the child moves through elementary school Three types of reading disorders are prominent: hyperlexia, dyslexia, and ADHD reading. The hyperlexic child reads beyond their level of comprehension, especially, if the topic is somewhat abstract. Reading comprehension goals should be included in the Individualized
ISSUE 31 2009
These children should not be punished because of sensory issues.
98
THE AUTISM FILE | www.autismfile.com
REPRINTED WITH PERMISSION OF THE AUTISM FILE
Education Plan (IEP) and a learning specialist should be consulted to help the child. Dyslexic children often have millisecond delays in auditory processing and/or rod dysfunction. Two published studies reveal poor rod function in 49% and 50% of autistic children. Due to poor rod function, many children have problems reading black on white print. For some, the letters move on the page. These children often read more easily on the computer with colored print. Color overlays are available at the Irlen Institute website that help some children. These children often lose their place on the page and struggle so hard to crack the code that they miss the content. With ADHD reading, children miss the content due to noise in the environment or their own internal thoughts. We have all experienced getting to the bottom of the page and not remembering what we read because our mind was elsewhere. Children with sensitive hearing often cannot weed out noise input as they try to read in class. Some need medications to improve auditory processing and focus. Many children with autism have far better visual attention than auditory attention. As they proceed through elementary school, visual reinforcers disappear by 3rd grade, and they are expected to sit and listen most of the day. The ADHD many autistic children demonstrate is internal distractibility with auditory processing problems. Anything that is taught and reinforced visually is easier for these children to grasp. Some are so visually distracted that they have to look away in order to listen. Every child with autism should have vision, hearing, and auditory processing evaluations on a routine basis. Some benefit from auditory trainers, sound cancelling headphones, and/or preferential seating. Once words and sentences emerge, the children often have a pragmatic semantic language disorder. Typically, speaking to adults or younger children emerges first, then language with peers. Outdoor interactive play (e.g., chase games on the playground) emerges before indoor interactive play. Social skills training should be included in IEP
ISSUE 31 2009
goals. Many school counselors do “lunch bunch” social skills training where a group of children discuss social scenarios over lunch. Social skills and self-esteem improve with participation in singleperson sports and activities such as karate, swimming, Scouts, and/or chess club with same-age peers. Typically, language emerges initially with a huge noun vocabulary, with clarity of speech before intent. Many children have prolonged word finding problems and pronominal reversal. They often lose both the topic at hand and social intent of the communication. Relationship Development Intervention (RDI) and social skills training is quite helpful with these children. At the elementary level, math problems include difficulty with word problems. Also, math is typically the subject most affected by errors of inattention. Put simply, the child “gets it” but makes careless mistakes. In a growing child, it is helpful to monitor math performance. These errors of inattention in math are often the first symptom of the medicine for ADHD not working anymore or of the child outgrowing the current dose. For many children with ADHD, math comprehension exceeds calculation. Treating ADHD in an autistic child is not simple. I always take a try-and-see approach with medications. I find some children respond well to the stimulants,
Strattera or clonidine. Medicines target the presenting symptoms. If high anxiety causes inattention, children may benefit from an SSRI medication. All drugs have benefits and side effects. I find zinc and methylcobalamin also quite helpful for attention problems. If the child needs medication, often lower doses for weight are more helpful without side effects. Middle school, teen years, and beyond Middle school presents its own challenges. Neurotypical (is there such a thing as a neurotypical adolescent?) children become increasingly aware of “what’s cool” in dress, slang, and projected lifestyle. Due to the adolescent’s surge in ability to comprehend more abstract concepts, children with autism seem more different for a few years in middle school. Bullies and the social hierarchy on the school buses are especially difficult to navigate. Parents may need to drive their autistic teens to school and report to the authorities if their child is bullied. By high school age, many maturing teenagers become kind and interested in other peoples’ differences. Many highfunctioning autistic spectrum disorder teens look more like their peers again. Although many children have improved by this age, keeping your IEP is crucial so that autistic innocent behaviors are not
Every child with autism should have vision, hearing, and auditory processing evaluations on a routine basis.
www.autismfile.com | THE AUTISM FILE 99
REPRINTED WITH PERMISSION OF THE AUTISM FILE
BIOMEDICAL
misinterpreted. Recently, a child I follow was shoved to hit a girl in the chest. The scenario that followed involved the police with sexual battery charges filed. The child had no IEP, so he required retesting to document autism before charges were dropped and social skills training was added to his then reinstated IEP. Out-of-school activities are helpful at this age, including visits to a gym, Scouting or participating on academic teams. Ongoing exercise helps with frustration. As a biomedical practitioner, I revisit supplement routines with families of adolescents. These need simplification at this point. The risk of seizures increases in adolescence. Some children become more aggressive, especially boys as testosterone increases. I find using medications with an antitestosterone effect helpful in teens with high testosterone (spironolactone, azole antifungal, and/or Lupron with precocious puberty). In children with high anxiety, oxytocin nasal spray can be quite helpful. Some children thank me because it helps them “get a friend” or “get invited to sleepovers for the first time.” SSRI medication and BuSpar can be helpful in some cases of high anxiety in teenagers. If symptoms worsen in a teenager, I reassess the child’s gut health, methylation support, and search for a cause of increased oxidative stress. Many teens rebel against special diets and long lists of supplements. I try to negotiate cooperation, simplify the list of supplements, and discuss personal environmental needs with the teenager. I explain why they should avoid certain foods, toxins, vaccines, dyes, and food additives. I explain the best diet as backto-God food.
All, even nonverbal, autistic adults should have a way to communicate, a job to support their independence and self-worth, and a safe supervised home-like environment in which to live and feel respected and valued.
They should choose foods around the perimeter of grocery stores, not the prepackaged, preserved choices in the middle. I explain the need for ongoing basic supplements such as vitamins and minerals, calcium, magnesium, zinc, B-complex, and methylcobalamin, to name a few. All children and teens need exposure to sunlight (>20 minutes a day with some exposed skin), exercise, and a healthy diet. For teenagers still unable to digest gluten and/or casein, I explain that staying off these foods will get rid of their feeling spacey, knowing that I get increased cooperation with the diet and use of enzymes. Older teens need to be monitored for poor endurance and/or exhaustion. Some teens with these symptoms benefit from Acetyl L-Carnitine 1000 mg/day and Coenzyme Q10 150 to 300 mg/ day. I look for and treat chronic viral infections. Hyperbaric treatments and oxytocin nasal spray help give the “with it” factor. Training in social skills remains helpful at this age to teach teen slang and innuendos. Parents should obtain power of attorney for their teenager at legal adult age. It is important to do this before a crisis arises. Recently, a patient could not be admitted to the hospital involuntarily because he was no longer a minor and his parents lacked power of attorney over him. Hopefully, by this age, the child has a case manager with Mental Health, Mental Retardation/Community Services Board. Parents should take advantage of all available benefits for the teen and adult child such as respite funds, in-home aides, financial support, and social/recreational programs for adolescents and adults. Many young adults with Asperger’s or high functioning autism spectrum disorder will successfully attend college en route to a successful career. Some students opt to live at home and attend a community college nearby. Others want to live on a college campus and experience campus life. Marshall University in West Virginia has such a model program with a positive behavioral support program. After being admitted to the university and the program, each student’s needs are assessed and appropriate academic, social, and life skills supports initiated. Hopefully, more such programs in the future will aid other students at this level. There are wonderful websites for young adults with Asperger’s syndrome and high functioning autism dealing with college resources. Other websites provide resources for dealing with adult sexuality. Many options are being created for alternative living arrangements for adults with autism. In the United States, many large institutions for adults with disabilities have closed down, and group homes, government-accredited and operated facilities and/or private facilities have opened in their place. With the current autism epidemic, there is a mushrooming need for adult housing. Other options include live-in caregivers and parent formed co-ops providing support service for adults with disabilities. Other communities have formed, with groups of group homes clustered in city and/or farm settings. Due to the enormity of this pending crisis in housing for adults with autism, parent groups should study this issue carefully and prepare different options for this population. All, even nonverbal, autistic adults should have a way to communicate, a job to support their independence and self-worth, and a safe supervised homelike environment in which to live and feel respected and valued. Let’s all work together now to assure this bright future for our affected children.
Parents should obtain power of attorney for their teenager at legal adult age. It is important to do this before a crisis arises.
100 THE AUTISM FILE | www.autismfile.com
REPRINTED WITH PERMISSION OF THE AUTISM FILE
ISSUE 31 2009
