Autistic Spectrum Disorder
By Lynette Louise
Autism, Autistic Spectrum Disorders, Autism Spectrum Disorders, Pervasive Developmental Disorder (PDD), Asperger’s Syndrome, Hyperlexia: Information, treatments current research, resources and helpful hints.
Autistic spectrum disorder (often termed “autism” or “autistic disorder”) refers to one of the pervasive developmental disorders. Autistic individuals may present with a wide variety or spectrum of symptoms, the severity of which ranges from severe to mild. However, they all suffer from some combination of the following diagnostic symptoms: language delays or other communication problems, poor or limited social skills and a propensity to engage in repetitive behaviors. These are the three areas of challenge with which you may be currently dealing and on which you will need to focus with the help of qualified professionals. Depending on the individual, one or many areas of the brain may be affected. Males are four times more likely to be autistic than females.
Your son or daughter may not have developed language and/or social skills normally in the early months of life. Even if he/she did develop such skills, she/he may have lost some or all of these skills. Your child may have begun using some type of repetitive body movement (e.g., hand flapping, spinning, rocking, head shaking). Perhaps your little one stares at a book, feels the shag carpet, or listens to the sound of the dryer for many, many minutes each day. Possibly, when you change things (e.g., buying a new blanket, replacing a favorite broken toy with a new one, redirecting the way a toy is used), your child pulls away, has inconsolable tantrums, or hurts himself /herself. Maybe she/he is overly sensitive to texture, lights, sounds, smells, or tastes. He/she may have delayed motor skills (e.g., walking, riding a tricycle, chewing). Maybe she/he prefers to play alone or maybe he/she just doesn’t interact with peers the way you thought she/he would. Possibly he/she is too busy lining things up, putting them in order repeatedly, flicking lights on and off, or opening and closing a favorite door. In addition she/he may display unusual motor behaviors (e.g., peering at things from the corners of her eyes, walking on tip toes, walking with an unusual gait). Finally, maybe your child’s enjoyment of affection has a strange quality to it as if love and affection were only accepted or enjoyed in an idiosyncratic manner designed by your child.
As you can see, autism looks different depending upon the individual child and his/her particular ‘recipe’ of perhaps two scoops of social, three scoops of repetitive, and one scoop of language challenge.
What are the odds that my child is autistic?
Once considered a rare disorder, today autism affects as many as 1 in every 166 children (though the figure can vary slightly dependant upon the source). That means nearly every 20 minutes a new case of autism is diagnosed. The diagnosis of autism is typically not made until 3-4 years of age or later. However, some early warning signs of autism appear in the first year of life, and it can be detected as early as 18 months of age. This is a significant amount of lag time. Research has shown that early identification and intervention can make the critical difference for children with autism although your child is never too old to be helped to a moderate degree
If you suspect your child may have autism, do not wait. There are many ways to find help. Fortunately, a great deal of information about autism and pervasive developmental disorders is readily available at the library and on the web. This includes how to diagnose and where to go for help.
This information may include a lot of incongruence about treatments, therapies and prognosis. Since autism is still not completely understood, much speculation and opposing views remain in the field even as we find new and better ways to help these children optimize their skills. You, the parent, have already begun to tunnel through the veritable cornucopia of treatments and beliefs about autism, ranging from traditional to alternative, holistic approaches. My advice is to relax. Though this is an important step that you want to make fairly quickly, it is not an emergency. Your child is simply, wonderfully special and not in danger of death. Take your time and make it an adventure. Otherwise, the search can be quite overwhelming.
What causes autism, and can it be prevented?
- There may be a genetic component as autism tends to run in families. In addition, studies have shown that identical twins, who have the same DNA, are much more likely to share the diagnosis of autism than fraternal twins, whose DNA is different.
- That being said, as of this writing, there is no known cause for autism. However many anatomical or physiological peculiarities have been found (e.g., cerebellar abnormalities, temporal abnormalities, oversized head, overgrowth and late pruning of neurons in the early years of development, overactive brain wave activity, deficiency of dipeptydal peptidase; abnormal levels of serotonin, dermorphin,sauvagine, opioids, secretin, free sulphate, or mercury). Scientists are working hard to make sense of all the data, and many theories have been put forth. None of these theories have proven to be universal to all autistic children or have allowed a given individual to be identified as suffering from a particular spectrum disorder with a specific cause. Nevertheless, many spectrum individuals have been helped through a variety of approaches. Autistic children are extremely complex. They have chemical imbalances, nutritional imbalances, hormonal imbalances, physical abnormalities and learning/behavioral deficits. Helping them requires a willingness to look at all the various possibilities while still not becoming overwhelmed and put out of action by the multitudinous possibilities. You have just become part of the puzzle. Revel in the challenge, partner with professionals in the field and begin.
- There is no known way to prevent autism.
What are some general age-related ‘signals’ you as the parent can use to help identify if your child is ‘on the spectrum’?
4 Months of age:
Your child avoids eye contact, does not react by looking at you when you make social sounds such as humming or clapping, does not show as much interest in people as objects, or does not smile back when you smile at him (without being tickled or touched).
12 Months of age:
Your child does not combine eye contact with smiling, does not babble or the babble does not represent speech, does not follow your gaze to look at objects, does not try to engage other people in what she/he is doing, does not respond when his/her name is called, does not point using the index finger, does not show caring or concern when you cry, or does not wave hi or bye.
24 Months of age:
Your child does not attempt to share her/his interests with you or others, does not imitate common activities such as driving the car, does not develop pretend or make believe play, or does not use two-word phrases in an appropriate manner.
What are the differences among the various pervasive developmental disorders?
There are several pervasive developmental disorders, and even within one particular disorder (e.g., autistic spectrum disorder), individuals differ in the spectrum of symptoms. Your child may even fit into more than one of the disorders as defined by different diagnosticians. This is because there are common elements to all the disorders, and the diagnostician relies heavily on how you, the parent, represent your child. Thus, since there are some subtle differences among the disorders that become important when designing a treatment protocol, you become an integral part of your child’s healing process every step of the way.
Autism (Autistic Spectrum Disorder) is a disorder of social, communicative and repetitive behaviors that are sometimes accompanied by severe fears, phobias, tantrums, overly-sensitive sensory systems, retardation, special talents (autistic savant), self-injurious behavior (e.g., head banging), an inability to creatively fill leisure time and skill sets that can be learned and then forgotten on a repeated basis.
Atypical Autism is different from typical autism in that it is often diagnosed as having had an onset after three years of age. It also has an increased dual diagnosis of retardation or low IQ scores. Additionally your child may receive this diagnosis if he/she only meets two of the three social, communication and repetitive diagnostic criteria of autism. Thus, since IQ deficits are easier to teach than social, communication and repetitive disorders, this means that atypical autism may be easier to treat than autism.
Asperger’s Syndrome is a separate developmental disorder that does not meet the criteria of other pervasive developmental disorders. Features of Asperger’s are severe and sustained impairment in social interaction; the development of repetitive behavioral patterns of behavior, interests and activities; and significant impairment in social occupational and other important areas of functioning. Asperger’s is considered a form of higher-functioning autism because there are no cognitive deficits or significant language delays (though they often are literal thinkers who have difficulty comprehending metaphors). Interestingly, though boys are four times more likely to have autism than girls, boys are eight times more likely to have Asperger’s than girls within the pervasive developmental population.
Hyperlexia is a remarkable disorder that is sometimes considered a subset of Asperger’s syndrome and is sometimes considered a disorder of its own. Hyperlexic children have a precocious ability to read words far above what would be expected for their chronological age or an intense fascination with letters or numbers. However, they have significant impairments in verbal comprehension, in social skills and in interacting appropriately with people. They may listen selectively, appear deaf, echo what is said to them (echolalia), or rote memorize commercials or passages from books with no apparent understanding of the meaning. Difficulty using pronouns correctly and comprehending ‘What…Where…Who…Why?’ questions. Like Asperger’s individuals, hyperlexics can be very literal thinkers with difficulty comprehending metaphors.
The hyperlexic child is best helped with a program of intensive speech therapy that focuses on language and comprehensions skills and uses the child’s reading skills as the primary teaching tool.*
* Teaching that uses a child’s interests and already-established skill sets and that builds on those skill sets using positive reinforcement is the most effective way to teach any child, on or off the spectrum.
Fragile X is included in this list because it is often confused with autistic spectrum disorder due to the large number of fragile X individuals that also have autism. Fragile X is a hereditary/genetic condition and one of the most common causes of genetically-inherited mental impairment. Its effects range from subtle learning disabilities with normal IQ scores to severe retardation, autism and ‘autistic like’ symptoms. It is believed that somewhere between 2%-6% of all people with autism also test positive for fragile X. One third of all fragile X individuals have autism. Since many families are completely unaware that they carry the defective chromosome, it is always a good idea to have your child tested for fragile X.
Discoveries of genetic factors and chemical imbalances offer much hope for families of children with autistic spectrum disorders. There is a lot already in place and available to families. Examples are family-based behavior and cognitive therapy play programs (e.g., Son-Rise, RDI, Greenspan aka Floortime, Teaach, Miller Method, Pivito, Response Training, Discrete Trial Training, ABA, Lovaas, Growing Minds). Also available are speech therapy; sensory integration techniques; and visual, auditory, and vestibular retraining programs. Get medications to help with behaviors when needed. Examine the “alternative therapies” that have been used by many clinicians with reported success. EEG biofeedback (neurofeedback) is one of the most exciting scientific advancements that appears to be holistic and not reliant on medications. (Please see special page on EEG Biofeedback on this website for an explanation of this exceptional methodology.)
Treatment Modalities for Autistic Spectrum Disorder
There are several treatment modalities for autism including individual psychotherapy, neurofeedback, home based family dynamics counseling (house calls), child-driven behavior play therapy, and up-to-date information on scientific advances in the field of autism.
- Psychotherapy helps individual family members replace dysfunctional, inaccurate thoughts and images (causing anxiety) with thoughts and images that are more accurate and decrease anxiety.
- Play therapy is the systematic application of scientific principles of playing in order to change behavior. It is taught in an attitude of fun and excitement. By creating an environment wherein the distractions are minimal and the child is in control, the parent is able to engage and be engaged by her/his child. An example of this would be spending time with your child in a quiet room wherein you have hidden a great many pieces of his/her favorite food. You are dressed as a baker; and every time she/he uses a sound, you run with great dramatic fervor and search for another bite to give him/her. After several of these games, you ask for a specific sound such as “eeeee” for eat. You model it, encourage it, wait for it and then praise your child for trying whether she/he does or doesn’t make the sound. Now, present the food and then play again. Laugh, smile and adore the moments as you teach, shape and love your child. We will help you learn how, and you will discover the blessing of play.
- Family dynamics counseling assists the family in achieving a more congruent environment for the autistic child, his/her siblings, parents and relatives. Raising an autistic child requires different skills than most parents have been fortunate enough to gain.
- Up-to-date information on scientific advances assists parents in choosing which therapy, program, or diet might be appropriate for their child.
- EEG biofeedback (neurofeedback) uses operant conditioning to alter brain waves so that a client’s brain can achieve more flexibility and stability. In addition, it can help decrease or prevent excessive arousal or anxiety and assist the client with attention and motivation. For families choosing home visits with dynamics counseling and play therapy, neurofeedback can be done in their home.
We at the Brain Therapy Center also have the requisite knowledge to allow us to have a close working relationship with physicians who may be prescribing medications. Dr. Harold Burke, Director of the Brain Therapy Center, has earned a Ph.D. and two M.S. degrees, one being a post-doctoral Master of Science in Clinical Psychopharmacology. He also has completed two years of basic medical sciences.
Some Helpful Hints.
- Seek help from mental health and educational professionals specializing in autistic spectrum disorder. Get a diagnosis. Regardless of where your child fits on the spectrum or even if she belongs in a different category like ADHD, trust your instincts. You are wondering about him for a reason. The sooner you get professional help in understanding what you’re dealing with, the sooner you can ask the question, “How do I help my child?” For example, you may seek out a licensed clinical neuropsychologist; such individuals have had extensive education and training in assessing and diagnosing neuropsychological disorders. Then seek a program run by educators and health practitioners trained in your child’s disorder. A psychiatrist should be considered if and when medications are needed for the child or for any other member of the family. Such medications may help with sleep, anxiety, or violent outbursts. Your primary care physician is certainly licensed to prescribe these medications, but psychiatrists have had much more training and experience in monitoring their effects and usually have the latest information about the best medications (e.g., that SSRI’s such as Prozac are considered more efficacious and safer than benzodiazepines effect. In any case, do not procrastinate in seeking help, especially if you find yourself and other family members struggling to cope. There is a lot that can be done for you, your family and your child.
- Accept that your life is different now.
You may not have dreamed of or imagined raising a child or even children with autism. This may not be the way you pictured your life as a youngster playing Barbie dolls or GI Joe. The future that has become your present may not have given you what you expected. However, it did give you a marvelous challenge that can be full of excitement and joy if you see it that way. You can lament what isn’t, or you can embrace what is.
So how would the lamenting choice look? Years and years of struggling, denying and dealing with shame and thoughts such as, “Why me?” until one day you realize that no one seems able to ‘fix’ your child without some kind of coordinating effort by you. So you start, fifteen or twenty years later. Good for you for making the decision, if that’s who you already are. However, if you are standing in the beginning part of this story, it’s a lot easier and quicker to roll up your sleeves, fill yourself with gratitude for all you are about to learn and get at it now.
You are noticing some differences in your child. This is the way it is. The longer you fight the possibility, deny the diagnosis, or close your eyes to the evidence, the longer it will take to get help. Children typically respond better to intervention the earlier the helping begins. This is not to say that there is ever a point when the child or adult is ‘unteachable’ but rather that it is easier to influence a child’s brain when it is young and still forming.
- Be a partner.
- Remember that, although you will be working with experts in mental health and education, you are the expert in your child. Choose professionals who recognize your expertise, greet you with respect and thrive when partnering with parents. Helping your child takes congruency of approach, consistency in the environment and a modeling of functional relationships. For optimal improvement, you must be part of the team. There is no mystery in what behaviorists do. Have them share their knowledge and then be excited to share yours. You will be richer as a result of the interplay between teaching your child, other professionals and yourself. Life with autism truly can be a blessing.
- Diet, nutrition and exercise.
A healthy diet is always a good idea whether it is for you, your child, or your spouse. However, just what a ‘healthy’ diet is and how to get your spouse or child to eat one are questions that become even more challenging when dealing with an autistic family member. Many autistic individuals choose colors or textures or special food groups and eat only those. Other individuals eat everything they are given but don’t know when to stop. Still others don’t know when they’re hungry. Some have difficulty chewing or swallowing and are challenged to eat at all. Experimentation, creativity, information and observation are the necessary ingredients to solve this puzzle. For example, your child only eats white food, and you read that some children are negatively affected by casein and gluten and that all children with autism should go on a gluten/casein-free diet. That’s the information piece. Now you experiment by removing these items (grains and dairy) from your little person’s diet. You already know white foods are more readily eaten. Therefore, be creative by finding white specialty breads, cut up white chicken breast, or grind up white blanched almonds to coat everything and magically make all colored food white. OK. Last step. Time to observe. If the change in diet has no effect on your child’ well-being or behavior, then this is not a necessary change for your family. However, by engaging in the experience, you will have still benefited; you will have learned about the choices your child is willing to eat. Voila! A healthier diet.
One more example; this one regards exercise. You just heard that some autistic children have too much serotonin while you also heard that serotonin increases one’s ability to sleep. Your child doesn’t sleep, and so you dismiss this idea. However, then you learn that serotonin is stimulated by movement and realize that your child often runs back and forth for hours at a time. You don’t know if there is a connection, but you do know that research has found that exercise increases deep sleep, decreases stress reactivity, increases self-esteem and increases such chemicals as BDNF (brain-derived neurotropic factor) that actually “heals” the brain. Therefore, you decide to do some experimenting. You let your child be your teacher and start taking him for long walks in an unpopulated area every day for a month. You make the walk fun by singing or clapping or whatever he/she likes, and by the end of the month you discover that you feel better though you’re not sure about your child. You try it out for another month mainly because it feels good. Then maybe you start to notice a greater bond between the two of you, an increased calmness in your child and also in you. Subsequently, you keep the walk as a part of your child’s program and smile a little smile every time you put on your one size smaller jeans.
- Decrease your stress levels
Stress makes it more difficult to think clearly, to remain calm, and to cope with anxiety and the events in life that can exacerbate anxiety. One of the most exacerbating things you can do is to view your child as a problem full of broken pieces. Every child is unique, and every child requires special handling. Yours just has a label. If you see your child’s unusual behaviors as the enemy and try to expunge them, you will always be at war with a member of your own family because for each behavior you train away a new one will pop up to take its place. Instead, investigate and try to see what your child finds fun in the bizarre aspect of his/her chosen activity. Join your child in play; and after a while, vary the game. This way, you will not be trying to extinguish parts of your child by hating what she/he likes. Rather you will be building upon his/her interests to normalize that activity into something more useful for learning and socialization. Actively admiring your child removes the stress. As for those often-repeated, hard-to-take repetitious sounds, try flinging a towel on doors that are constantly slammed, padding your tables, or buying plastic spoons instead of noisy metal ones. Having fun with it makes it easier to come up with good ideas.
Finally, reach for help. Psychotherapy, biofeedback, exercise (e.g., aerobic, yoga, Tai Chi) and meditation/prayer have been shown to be effective in decreasing stress.
If your child suffers from sleep disturbances as do many autistic children, make sure that his/her disturbances do not become yours. Inadequate sleep makes coping with life’s challenges more difficult. Of course, there are many health store and over-the-counter sleeping pills that may help. However, taking excessive over-the-counter sleep aids is not a good answer; they can make things worse. Similarly, taking benzodiazepines (e.g., Xanax®) on a chronic basis is not recommended by many experts. For one thing, your sleep may be too heavy, and that may increase your anxiety as you worry about being available to your child. In addition, medication can make your sleep worse, at least temporarily, if you stop taking it. You may become dependent on benzodiazepines; and they can impair your cognition, memory, and reaction time. A published study has shown that average doses of alprazolam (Xanax®) can impair driving, divided attention, and reaction time. These are skills that you are going to need in order to properly supervise your autistic child. Sleep medication for your child is also a complicated decision and must always be done under the strict supervision of a qualified physician.
- Even if you do try medication, many spectrum children do not respond well or even at all. Conversely, some are calmed significantly by the tried-and-true ‘ride in the car’, lavender under the nose, or hemi-sync sleep music. However, if your child is still awake despite all your best efforts, do continue to investigate. However, investigate later; you need your sleep now. Therefore, create a safe environment in which he/she cannot hurt herself/himself whether awake or asleep, and go to bed. The only way to prioritize your child is to prioritize you.
- Don’t romanticize the disorder.
Many people see an autistic child as a child in some other zone with special talents. They use terms such as “in his own world,” “gifted,” or “indigo child”. They mystify the child’s unusual ability to focus on the minute details of colors, smells, textures, or sounds. Because they can’t understand it, they assume it to be magical. If people are telling you not to try and change your child because his/her special talents may be expunged, thank them for their concern and then walk away and get back to the business of reaching out to your child.
The fact is that all parents teach. The only difference is that you are going to be intentional and learned about it. Of course your child is special and unique. Even among the population of spectrum individuals, your child has her/his own special brand of beautiful. That is the marvelous aspect of this approach. We are not going to take away; we are going to add. We are going to help him/her and you become more, not less.
- While you play, teach.
Use music. Many autistic individuals respond positively to music. Some even speak only in song. Therefore, sing. If your child calms, gets excited, comes nearer, looks at you, or joins in, you have a means to communicate. Sing your instructions, sing your praise, sing your ideas and sing your love.
Use numbers. As with music, numbers can be the delight of an autistic child. Bemoaning an obsession with numbers misses the opportunity to interact and to begin the bridge of bonding. Play with the numbers. Count how many drawers to the pajama drawer or how many steps to the toilet, subtract each tooth after adding the number of brush stokes, or lay out pictures of the family in ranges of ages and match the years in which they were born. Numbers, numbers, numbers. What a great opportunity to improve your math skills.
Use puzzles. Once again, here is an opportunity to teach and connect. Anything can be made into a puzzle: favorite Disney characters, pictures of favorite toys, or a pair of old coveralls. If she/he won’t look at you, try puzzles of eyes or mask puzzles with the eye holes cut out, which once put together can be put on. If he/she looks at you, say, “Thanks.”
Use tickles, squeezes and airplane rides. Many autistic kids respond to sensory and vestibular treatment modalities. They have challenges in this area. Your child may even be performing her/his own therapy by spinning or head banging. However, if you start giving rides, tickles and squeezes, you become an integral part of your child’s world while at the same time stimulating her/his proprioceptive, sensory and vestibular nuclei.
More than with any other child, be prepared to do it again and again and again and again. As he/she asks for more, so do you: another sound, a whole word, a sentence, two sentences, etc. Then, because you appreciate her/his trying, give the ride whether he/she says the word or not.
I’m sure this sounds like a lot more playing than you had planned. Lucky you. Your child is about to help you reorganize your adult years and stay young.
- Be comfortable laying down boundaries.
Begin by explaining what you want and why. For example, ‘There are germs in the toilet that may make you sick. I want to keep you healthy, that’s why I won’t let you put your hands in the toilet.” Now block him/her from the toilet. Your child will only know what you want if you tell her/him. Children with autism often have attention problems and slower mental processing speed. Therefore, be prepared to tell your child repeatedly. This is not a failure in your ability to teach; this is just the way he/she learns. Now, be OK if your child tantrums. Keep her/him safe if he/she flings herself/himself around. However, don’t react with any emotion. If your child likes to destroy things, minimize the choices and keep nothing around that would upset you to have it broken. If he/she simply pulls away and moves to engage in her/his repetitious behaviors, thank him/her for not putting her/his hands in the toilet and give him/her some time to process what you have said. If she/he listens and complies, respond with gusto, celebrating and telling him/her how amazing she/he is.
The idea here is to shape your child’s behavior in the same way that you would encourage a plant to grow towards the light. Give no emotional response to the behaviors you wish to discourage (leave them in the dark) and give lots of joyous (sunny) delight for the things you want to help grow. Your child may not be motivated by the same socially-acceptable things as you. So help your child find his/her way. Lay down the road map with very frequent positive reinforcements such as “I love it when you look at me,” “What a great voice you have” and “You’re the nicest person, I’m so lucky to have you.” Your child will respond even if at first she/he shies away. So explain everything, especially how incredible you think each of his/her accomplishments are.*
*Just because your child may not communicate normally, don’t assume she/he doesn’t understand. Many people push and pull autistic children while working under this assumption. Perhaps many of his/her outbursts are related to just such a world of having no control.
Inspirational stories, such as A Miracle To Believe In by Barry Neil Kaufman, may be helpful. However, please realize that there is no substitute for the hands on help of a specially trained therapist.