What Is Autism?    

A Neuro-Developmental Disorder

 Autism is a neurodevelopmental disorder usually first identified during early childhood, that causes what is often referred to as a ‘triad of social impairments.’  This autism triad consists of effects on social development, the development of communication skills, and the activities and interests of the child.  Social development is more effected than speech and language development, though almost all children with autism have difficulties with the social aspects of communications, like not making enough eye contact, not fully understanding facial expressions, and poorly understanding tone-of-voice, gestures, or other body language.  Children with autism often show little or no imagination in play, or play with things in odd, highly repetitive, or unintended ways.  Autism is usually first recognized between 18 months and 3 years of age.  It affects 4 or 5 times as many boys as girls.  The reported rates of autism and related disorders have increased from 1:2,000  to 3,000 persons/population in the late 1980s to 1:150 today.  Much of this change seems to be the result of increasing recognition of autistic symptoms in disabilities that used to be called something else, recognition of mild forms of autism symptoms, and actual changes to diagnostic criteria (Yeargin-Allsopp, etal., 2003).  In this article you will learn about what is being called autism or the autistic spectrum today, how our understanding and concepts about autism have shifted in the last 20 years. The article will cover what can be done to identify and then help the children now seen as being on the autistic spectrum. 

 The classification of autism as a neurodevelopmental disorder means that it is understood to be based in a brain difference that may arise from one or more causes, a phenomenon sometimes referred to as multi-factorial (see What Causes Autism?, below).  The word ‘autism’ comes from the Greek word autos which means ‘self’, as a child with autism is often described as ‘in his own little world.’  This autistic aloofness can be striking to parents who often feel that the young child with autism does not need them the way other children of the same age need their parents.    A good introduction to autism is The World of the Autistic Child.

 
Natural History

 Autistic symptoms are most severe the younger the child is.  In fact, early signs of autism, and other severe developmental disorders can be hard to tell apart in the first year of life, when a child does not yet talk, play imaginatively, or is too young for true friendships.  Autism becomes apparent as these skills should develop and either don’t, or do so in characteristically atypical ways that will be described as we go on.  Only a small number of children eventually lose their traits of autism and seem much like others their age, except perhaps for subtle differences mainly apparent to those who knew them when symptoms were more severe.  Because different clinics more readily apply the diagnosis of autism to very mild forms, it is still impossible to know exactly how many truly once met criteria for an autistic spectrum disorder, and then later, after treatment, no longer did.  It does seem clear that those with more mild symptoms tend to respond more fully to treatments than those with more severe symptoms.  A small proportion outgrow special education services by early elementary years.  Another group continue to receive some supports but can be educated in general education classes.  Of these, some return partly or fully to special day classes in middle and high school because they may struggle with the more abstract academics, or the increasingly complex social world of secondary school pupils.  In the past, a very small number graduate high school with or without special supports.  However, in the last 10 years, as the reported rates of ASDs have skyrocketed, more children with more mild symptoms are being counted as ASD, and the numbers with higher levels of educational attainment will likely rise because of that, as well as because of better treatments.  Similarly, in the past, very few with ASD diagnoses lived fully independently or married or had children, but this too will likely change as ASDs are increasingly defined to include a smaller proportion of individuals who also have some degree of mental retardation.  Parents understandably worry what will become of their adult children if they still need special help when they themselves are too old to provide it.  In those cases, in most states in the US, there are public developmental disabilities departments that fund residential, vocational, recreational, and mental health services for developmentally disabled adults.

What Does  ‘Autistic Spectrum Disorder’ Imply?   

We’ve been hearing a lot more about autism lately.  Why?  There are several possible explanations.  In addition to the term autism, there is increasing reference to autistic spectrum disorders.  The concept of a spectrum reflects many descriptive studies that illustrate how each specific sign of autism can be mild or severe, and that the number of overall signs may be numerous or few.   The term ‘autistic spectrum disorder’ has become much more commonly used than the term ‘pervasive developmental disorder’ (PDD) which is the medical-psychiatric term for basically the same thing.  Distinctly different forms of pervasive developmental disorders are diagnosed using a set of 12 criteria listed in a manual called DSM-IV-TR.  This is the current diagnostic and statistical manual of the American Psychiatric Association (4^th Edition, text revision).  Different forms of pervasive developmental disorder include autism itself (autistic disorder, in DSM-IV-TR terminology), pervasive developmental disorder, not otherwise specified (PDD,NOS—which many simply refer to somewhat inaccurately and confusingly as ‘PDD’), Asperger’s Disorder (also called Asperger’s Syndrome or simply Asperger’s), plus some much more rare variants like Rett’s Syndrome and childhood disintegrative disorder (CDD--also called Heller’s Syndrome).  Since the publication of DSM-IV, a gene responsible for Retts Syndrome (which occurs vastly more often in girls) has been discovered, and because of this, and because autistic-like behavior is often a transitory early phase of Retts, it may no longer be considered part of the autistic spectrum in the future as the developmental course of Retts is degenerative, and therefore very different from other forms of autistic spectrum disorders.  CDD, even more rare than Retts, is only diagnosed when development, including full development of speech, has proceeded normally, and is then lost around age 5-7 years old.  (This is quite different from loss of initial words or phrases that may occur between 1 and 3 years of age and is referred to as language regression).  After regression in CDD, development is in many ways very similar to other cases of autism. 

What Isn’t An Autistic Spectrum Disorder? 

Where are the boundaries drawn with respect to what lays outside of the realm of an autistic spectrum disorder or a PDD?  There is not wide agreement on this as the DSM-IV does not specify how few symptoms one might have and still be considered to have PDD-NOS, nor does it clearly specify how impaired the individual need be as a result of these symptoms.  The general understanding about all DSM psychiatric diagnoses is that a symptom must be persistent and troubling to contribute to the diagnosis of a disorder.  Just as there are anxious people who may not have a diagnosable Anxiety Disorder, or others who may have depressed feeling but do not meet criteria for a Major Depression, there are children and adults who are socially avoidant, or a bit intense about hobbies and interests who do not have autism or Asperger’s syndrome—because they are not significantly hindered in daily life by these traits. 

The second consideration of when a sign of autism might not be autism is to consider that symptom as part of a whole:  The autistic spectrum can be thought of as a syndrome, which in medical terms, means as part of a group of symptoms that often occur together.  A common cold can be thought of as a syndrome.  Sometimes you might have a cough and sore throat, on another occasion, sneezing and stuffy sinuses, and on a third occasion, all of those symptoms.  Each time it would be a cold.  However, if you were only sneezing and feeling fine, you might wonder if you were experiencing an allergy.  The same is true of the autistic spectrum:  One socially aloof child might only talk echolalically, and flap his hands when very excited by a preferred activity.  Another aloof child might not talk, and also flap his hands.  However, a child who only flapped his hands, but was neither aloof nor had specifically autistic language problems might have another disorder, or in fact, no disorder.  The syndromic nature of autism makes its diagnosis complex, and calls for expert assessment to weigh the qualities, frequencies, and possible alternative explanations for each symptom, because as with a common cold, any individual sign could be indicative of something else instead. 

 
Early Signs of Autism

 What are the early, first signs of autism?  How young can autism be diagnosed?  First of all, it is important to realize that the younger a child is, the less specific, the less unique are the signs of any problems.  An 18-month-old who has not yet begun to talk could be autistic, but he also might be deaf, mentally retarded, language-impaired, under-stimulated, from a bi-lingual home—or just slower to develop language that will be just fine when it does appear.  It takes multiple indicators to have some degree of assurance that early concerns are signs of autism, and not something else.   What early signs of autism are most common (statistically referred to as ‘sensitive’) as well as unique (statistically referred to as ‘specific’)?  The following signs are the top 10 sensitive and specific indicators of autism from the  PDDST-II (Pervasive Developmental Disorders Screening Test) Stage 1, a pediatric  primary care screening test (Siegel, 2002) and can identify high risk for autism in infants as young as 18 months old. 

Key Early Autism Signs

Adapted from the PDDST-II Siegel (2002) San Antonio/ PsychCorp.

 
If you feel your child shows some of these signs, it doesn’t mean he must have autism.  If you are worried about your child’s development—for whatever reason, it is going to seem like some of these are true at least some of the time.  Whether these signs are truly positive for your child will depend on his age, overall level of development, the frequency of these signs, and what else is happening ‘right’ or ‘wrong’ in development.  However, if you feel that a number of these are possibly positive, mentioning your concerns to your pediatrician could be really worthwhile, even if you’re a little apprehensive of what he or she might say.  The American Academy of Pediatrics (www.aap.org) endorses developmental screening twice by age 2, so there is nothing wrong with mentioning your concerns to your child’s doctor.  Most often, if a pediatrician feels a child might have autism, that child will be referred to a special autism clinic, a multi-disciplinary developmental disorders team, a clinical psychologist, a developmental-behavioral pediatric specialist, or a neurologist. Depending on the resources in your area, one or more of these assessment options may be available (and are listed here in the order in which expertise in autism is often found).   Three web sites with really good resources on  early signs of autism are: www.firstsigns.org and www.autismspeaks.org, and the Centers for Disease Control (www.cdc.gov/actearly).                

Diagnostic Signs of Autism

 What signs and symptoms are diagnostic?  What goes into a good quality diagnostic work-up?  The section above has just described some early signs of autistic spectrum disorders that are key in screening for ASDs.  Screening and diagnosis are not the same thing.  Screening means determining whether there is enough concern to assess the child for autism.  Screening is usually accomplished through parent-reported questionnaires like the PDDST-II, or the MCHAT, SCQ, GARS, or CARS.  A positive score on one of these questionnaires should always be interpreted to mean that the child needs to receive a diagnostic assessment for an autistic spectrum disorder, not that the child has the disorder.  No parent questionnaire alone can reliably diagnosis autism and shouldn’t be interpreted  that way.  In Getting Getting the Best for Your Child with Autism (Siegel, 2008), there is detail about interpreting screening tests for autism, what to do after screening, and what goes into a good quality assessment for ASDs.

 In this section, the focus will be on the specific criteria that are used to make a diagnosis of autism, each followed by some information about the qualities that are associated most closely with autism.    

Diagnostic Criteria for Autistic Spectrum Disorders (DSM-IV-TR)

Italicized material in the above table is adapted from DSM-IV-TR (American Psychiatric Association, 2000). 

Many children with all sorts of developmental disorders may have one or two of these signs of autism.  Sometimes, this is referred to as  'autistic-like,' or colloquially as  'on the spectrum.  In the popular media, reports of children with features of autism are usually changed simply to 'autism,' often lending to the erroneous impression that everything from prematurity to vaccine-related autoimmune responses can cause autism itself.  Because of how the diagnostic criteria themselves have changed over the years (see above), as well as how public awareness and treatment resources for autism have expanded over the years, many children with autism today would have been labelled as having something else 10, 20, or 30 years ago.  A good example of this is the numbers of children with Downs Syndrome being also diagnosed with autism.

            Clinicians Who Can Diagnose Autism.  When a clinician sees a child for an ASD assessment, he or she examines which of these signs are significantly different from what is expected for the child’s level of development (or from adult functioning, if the assessment is an assessment of an adult).  Because ASDs are a syndrome, the clinician also considers what other disorders might account for these difficulties more fully.  It is important therefore, that the clinician is one who sees many children with ASDs and related disorders so they have a good basis for knowing what’s normal or not.  In addition, the parent needs to make sure that the assessment for a possible ASD depends on many sources of information as possible—direct observation and reported history, home and school, mother and father—as the child is likely somewhat different in each setting and with different people.  It is the ‘average’ or typical behavior pattern that emerges from all these data sources that produces a solid diagnosis of an ASD.  Clinicians best qualified to make an ASD diagnosis are one in specialty autism clinics.  Child psychiatrists, child psychologists, child neurologists may have had a great deal, or little to no training in diagnosis autism so it is important to ask.  Pediatricians and family doctors most often get little to no training in diagnosing ASD or other disorders that are ‘behavioral’ diagnoses.  (There is no blood, gene, urine, or even brain test to determine if a child has autism.)  An ASD may first be identified in schools by school psychologists.  However, in the US, each state department of education can have its’ own definition for an ‘autistic-like learner’.  This definition is often broader than a medical diagnosis using DSM standards.  
The diagnosis is made if these symptoms cause impairment in daily functioning.  If there are positive symptoms in each of the three areas of the ‘triad’, and at least six symptoms are positive overall, ‘autistic disorder’ (autism) is diagnosed.  If less than six are positive and/or there are no positive signs among the individual’s ‘activities’ or ‘interests’, then PDD-NOS is diagnosed.  If there are at least two ‘social’ and one or more ‘activities and interests’ symptoms, and there is no intellectual disability, then Asperger’s Disorder (Asperger’s) may be diagnosed.  If full criteria for autistic disorder are met, and there is no intellectual disability/ mental retardation, the individual is often then described as having high functioning autism (HFA).

 
What Causes Autism?

                                      

            Neurobiology Research. Autism is a disorder that affects how the brain is developed:  Postmortem,studies and many kinds of brain imaging have shown that many brain structures may be involved in autism (e.g., DiCicco-Bloom, etal., 2006). These include the limbic system (hippocampus, amygdala), and cerebellum (Bauman & Kemper, 2005).  Other research shows that the chemicals called neurotransmitters such as serotonin, dopamine, and epinephrine that send message between nerve cells and across regions of the brain may also be abnormal in some cases (e.g., Akshoomoff, Pierce, Courchesne, 2002). What is clear from all these studies that have used different methods to understand certain structure and function is that the neurobiology is altered.  However, because of different kinds of subjects in different studies, and different symptoms present in different subjects, any sort of coherent, unitary ‘theory of autism etiology’ remains elusive.  

Genetics Research.   How does the brain come to develop and function differently in autism?  Autism is understood to be largely genetic.  Genes contain the instructions that form the brain.  Genetic research in autism began in the 1960s when it became clear that if one identical twin had autism, there was a very great probability that the other twin would too.  (Some studies have estimated as many as 95%.)   This was much less true for fraternal, non-identical twins (around 7-15% concordance), and still less for siblings from the same parents but different pregnancies (3-15%).  (When concordance is defined as both having autism, the rates are lower; when it’s both having some form of ASD, it’s much higher.)   These sorts of population studies tell us autism is genetic, but don’t reveal what gene or genes are involved.  Other kinds of population studies suggest 7 or more genes, and that the assortment of autism-related genes may be different in different family trees.  Further, it is not at all clear whether these genes or some of these genes are really defective at all, or whether a case of ASD might be an extreme variant of normal gene’s expression. 

   Autism is not more common in any racial, ethnic, or socio-economic group.  Rates can vary from country to country—though these variations can be fairly well-explained by how developed the medical system is, and the extent to which a child with a developmental disability is viewed as a stigma. (An interesting sidebar is ‘the Geek Syndrome’ (e.g., Silberman, 2001), high tech industry parents of children with autism who themselves are smart, usually much more socially-skilled than their offspring, but stand out as socially ‘different’ compared to equally smart peers in other professions).  

Complicating the autism genetics picture is whether any defective genes that might run in families of children with ASDs actually cause the disorder, or whether they simply predispose a fetus or baby to be vulnerable to developing an ASD if exposed to just some specific sub-optimal factor that might be a non-optimal prenatal event, an environmental trigger, or some sort of birth injury.  Some children with ASDs also have seizure disorders and estimates of the numbers who have ever had a seizure range around 30%.  A small number have a couple of seizures in infancy and never again.  The same is true in adolescence.  Many fewer have lifelong seizures. 

            Autism and Genetic Counseling.   Since gene markers for symptoms of ASDs are just now being discovered, amniocentesis or other prenatal genetic testing cannot specifically test for autism or even autism risk.  Instead, the current standards can test for developmental disorders like Downs syndrome, and for Fragile X Syndrome, a disorder that occurs in only half-a-percent of children with ASD.  Less than 5% of cases of autism have been explained by known genetic mechanisms and some of those are very rare, having been found only through special tests on family trees with many individuals with variations of similar symptoms.  Further, many cases of autism are thought to be ‘sporadic’ or non-heritable one-time mutations.  Other cases, especially when more mild forms of symptoms are involved, may be extreme phenotypes—a trait that is so pronounced that it endows impairment, (Zhao, et al, 2007). Older mothers (over 38 and certainly over 40 years old) have always been known to be at higher risk for all sorts of developmental disorders in their babies, including autism, which may or may not be separate from other associated suboptimal prenatal or perinatal (around birth) events (Brimacombe, Ming & Lamendola, 2007).  Research suggests that early first trimester suboptimal events may be more common in children who develop autism than typically developing children—though first trimester problems can be implicated in many other physical and developmental problems too.   More recent data support an additional/ separate role for older fathers contributing to increased risk for autism.  There may be emerging data to be concerned about the rate of neurodevelopmental disorders in children resulting from assisted fertility pregnancies—though many of these are to older mothers and are high risk in other ways.  A child with ASD who was born following a risky pregnancy may not be as strong a marker for autism recurrence if the subsequent pregnancy is without complications or is a girl.   Half-siblings and first cousins will both have autism much less often than full siblings.  Overall, a family with one autistic child has about a 1:25 to 1:33 chance of having another ASD child if they already have one (NIH, 2008). 

What Doesn’t Cause Autism?  Childhood vaccinations do not cause autism.  The mercury preservative (thimerisol) that used to be in American vaccines was removed 10 years ago in California—and the rates of autism there have continued to rise, (Schechter & Grether, 2008).     Very few American children get vaccines with thimerisol preservative any more.  The topic of autism and vaccines has been exhaustively studied by the US Centers for Disease Control and Prevention (CDC), the US National Institute of Health (NIH), the American Academy of Pediatrics (AAP) and by many individual investigative teams.  To date, no environmental causes of autism that have been studied have been identified to cause or increase the rate of autism, though it is plausible that genetic differences endow certain people with risk factors that may make them more vulnerable to environmental toxins (Lawler, Croen, Grether, & Van de Water (2004).

The other widely-discredited cause of autism is bad parenting.  In the 1950s and 1960s when autism was first being recognized in the US, writers like Bruno Bettleheim likened children with autism to an ‘empty fortress’, fortified against a cold and rejecting ‘refrigerator mother.’  While warm nurturance in the early years of life is indeed an essential ingredient of secure child development, the absence of sufficient love does not cause autism. 

      Children with Autism Learn Differently           

In the section above on Diagnostic Signs for Autism there was information of the qualities and severity of difficulties experienced when an individual has an ASD.  Equally important is what the presence of each of those signs implies for learning; what has been termed ‘autistic learning disabilities’ (ALDs) (see Helping Children with Autism Learn, Siegel, 2003).  In addition to specific learning problems or ALDs common in autism, there are also common learning strengths that can be thought of as 'autistic learning styles' (ALSs).  In thinking about treatment for a specific child, it is useful to think of how that child's ALSs can be best capitalized upon to aide that child's ALDs.  Thinking about autism this way can help in navigating the very different choices in treatment that parents face.

In the social domain, the individual with an ASD lacks affiliative drive, the innate desire to do like, be like, and be accepted and noticed by care-giving adults and other children.  Children with autism do not naturally have much response to social praise, the coin of the realm in all early education settings, making learning there often very difficult.  In the next section, approaches to treatment will be discussed.   Treatment is essentially a process of ‘habilitation,’ building capacity in ways that are understood to capitalize on early brain ‘plasticity’ or on ‘transfer of function’ in the brain.

In the domain of communication, individuals with autism can fail to develop theory of mind (the early understanding that you and another can ‘see’ the same thing in your minds ‘eyes’) which attenuates the child’s seeking of parental joint attention to things of interest—as the parent is not seen as having a shared perspective nor a knowledge base that could add to what the child is interested in.  (This is why children with autism are understood to seldom point out things of interest as infants.)   Without shared attention or perspective, the motive to communicate is reduced.  It is often compounded by problems in recognizing or decoding language as fast as other children (which may be labeled as central auditory processing disorder--CAPD).  When auditory memory is a relative strength, this may produce distinctive signs of autism like echolalia—where the child can repeat things whole, seemingly with limited or no decoding of meaning.  (In treating ASDs it becomes important to recognize relative strengths—like auditory memory, and look for ways it can be exploited to help develop compensatory learning strategies.) 

In the domain of the child’s activities and interests, play is often seen as distorted by overly sensory, non-functional, repetitive, ritualistic patterns.  In typically developing children, play and language drive one another forward, with play as the ‘stage’ for rehearsing language meaning, and language the engine for scripting and directing play.  Repetitive play as well as repetitive motor movements and repetitive sensory use of objects arises when there is no driving script, when curiosity to vary activity and explore things in new ways is attenuated by overall intellectual disability or by intense autistic focus on narrowly circumscribed objects and activities.  Either way, the child experiences mental ‘down time’ when no little or new information is being received—which does not drive brain development nor subsequent knowledge accrual in expected ways.  As will be described just below, this explains well why it is that intense, structured interventions can be so effective with many children with ASDs who on their own are rote and repetitive. 

 
Treatments for Autism 

As a syndrome, autism can be expressed very differently in different children.  The ‘hows’ and ‘whys’ of that have already been explicated.  It makes sense, therefore, that treatments for ASDs, in general, and for autism in particular, will need to be individualized, too.   There are several successful, broad evidence-based principles of treatment that were identified in a comprehensive review of autism treatment outcome research commissioned by the National Research Council.

Abstracted from Educating Children with Autism, Washington DC: National Academy Press (2001).

             These guidelines can be translated into two key dimensions to consider in selecting and planning treatment for a particular child with ASD.  One is developmental. The other is behavioral. 

Developmentally, teaching the child begins where what he knows leaves off.  This is the main reason why diagnostic testing includes tests that give the child’s mental age or ‘age equivalents’ for the child’s receptive or expressive language age, adaptive behavior level, and so on.  The child with an ASD often exhibits many of these ages at the same time, and treatment plans to develop skills in different domains may need to be geared differently in different domains (this will be discussed below in terms of educational concepts like ‘mainstreaming’ and compensatory teaching.

            Behaviorally, most typically-developing children learn a great deal simply because they are naturally curious, and because they are eager for parent or teacher acknowledgement or praise.  The engines of the curious child’s learning are imitation and experimentation (like seeing that food dropped from a highchair into a dog’s mouth always produces the same result).  They are fueled by parental praise.  The response to this reinforcement is more self-guided, systematic learning.  For the child with autism, these engines that drive learning can be turning over at too low rpms, or misfiring.  Beginning in the early 1980s, research by behaviorists working with children with autism and with mental retardation began to show very promising results when behavioral technology that provided rewards other than the innate rewards accrued from the products of curiosity and social attention.     Discrete Trial Training and How It Works.  The first wave of behavioral studies in autism was lead by Ivar Lovaas at UCLA.  He published a ground-breaking study in 1987 suggesting much more positive learning outcomes with children with autism who were taught by repeated discrete trials of simple tasks that were learned to a high level of mastery.  This was accomplished by reinforcing accurate responses with a tangible ‘primary’ reward like a tiny bit of a preferred food.   Using classical conditioning (remember Pavlov ringing a bell before feeding dogs who then began to salivate simply upon hearing the bell), Lovaas pioneered discrete trial training (DTT), precision, step-by-step teaching that paired primary rewards with social praise until task mastery could be largely accomplished using social praise alone—just like for a typically developing child.  Lovaas’s DTT method did not fully address the problem of getting the child to be self-rewarded by his own successes.  Children would learn the things they were interested in and good at quite readily with DTT (like puzzles and building with blocks), but it did not work as well for things that tended to be more difficult, such as speaking.

Pivotal Response Training and How It Works. The second wave of behavioral research to help autistic children came in work by some of Lovaas’s early students like Laura Schreibman and Robert Koegel, and Lyn Koegel.  They addressed the second problem of self-initiative in learning with a behavioral technology they called pivotal response training.  These are specially arranged trials (some are DTTs) but where the child’s action leads to an interesting result—just like for a typically developing child.  An example of a ‘pivotal response’ would be to say ‘juice’ to get juice, rather than naming juice as one of several pictured foods and then being told ‘Good job!’  An approach closely related to PRT is natural environment teaching (NET) which is based on the same premises but looks to opportunities intrinsic to daily living to provide opportunities for the child with ASD to be reinforced in the use of emerging skills; learning happens in the context of getting things he wants to happen rather than in specific direct teaching situations.

 ABA Programs versus Other Autism Treatment Approaches.  The foregoing explanation is intended to help in understanding how treatment programs that use these principles work.  Collectively, these programs are referred to as ABA (applied behavior analysis) programs often administered at home (which helps parents to see how their children can learn), but also sometimes at school.  Most children who receive ABA programs start with DTT, and can be introduced to PRT as a way of readying the child for the more self-initiated learning expectations he’ll encounter in the educational mainstream and in everyday living.  Sometimes ABA programs are not available, or because they involve 1:1 or 1:2 teaching, are too costly, or require more trained personnel than are available.   While these programs have the strongest evidence-basis for young children, the type of analysis that came from the NRC review (described above) give reason to expect that ABA programs are not the only way a child can learn if the program still has the qualities identified as critical to early learning (in the table above).  ABA programs are often the first intensive treatment a child with ASD receives, and it is therefore important that treatment is content is developmentally appropriate—say, teaching the child names of favorite foods before names of colors or shapes.  It is also important to remember that children with autism are children first; if a newly-diagnosed 18-month-old is still taking two naps, those should not be cut out to make more time of treatment.  

 Child-Centered Treatment of ASDs. Many ABA programs have lacked a developmental curriculum.  Teaching is often rote, and the child has no intrinsic interest in what is being learned outside of the primary reward he might eventually receive.  Skills can be, and often are, taught in an arbitrary order (for example, teaching a child to identify body parts before learning a name for mom or dad), and this does not comport with typical development—where children name parents long before labeling body parts.  Though this more rote application of ABA principles is declining with the introduction of PRT and NET technologies, it is still, more often than not, the norm.  Many therapists, educators, and parents are troubled by this, and by the authoritarian look and feel of early ABA programs and so have sought out treatments based more on letting the child determine the topic for interaction, which the adult then expands and or makes more meaningful and sustained.  Examples of these approaches are Floor Time also known as DIR  (Greenspan & Weider, 1998) and a more manualized, packaged set of similar principles known as RDI (Relationship Development Intervention—Gutstein, 2002) .  (Having a manual, training videos, curriculum worksheets can be really helpful to a parent faced with carrying out treatment or training others to do it with him or her.) In these approaches a therapist (or a coached parent) interacts with the child based on many principles that Greenspan derived from principles of child play psychotherapy.  While this provides a theoretical foundation for practice of child-centric intervention methods, it lacks the same degree of empirical scrutiny to which ABA programs have been subject.  

Educational Mainstreaming as an Intervention for Autism. 

Parents often wonder when mainstreaming into school is appropriate for their child or teen with an ASD.  Mainstreaming or inclusion is when a pupil is educated outside of special day classes, receives some or all services in general education, but is sometimes supplemented by some special education classes and/or related services such as speech and language therapy, occupational therapy, or addition of a para-professional instructional aide who is available full or part-time. The first guideline for parents considering mainstreaming is that it can be more helpfully regarded as a means than an end.  The second guideline is that mainstreaming works best when the pupil can be expected to make meaningful educational gains when exposed to a curriculum that is developmentally within his grasp.  When this is not done, paraprofessional aides, often with little to no formal education in teaching, are essentially often left to run a separate day-to-day program for the child with ASD with only periodic supervision.  Paraprofessionals can provide an accommodation to the curriculum, by repeating instructions, helping the child find the focus of classroom attention, or making visual what is verbal.  The more difficult task of identifying, structuring, and administering compensatory educational strategies (additional or alternative ways to learn) requires direct and on-going contact with a qualified special education teacher.  Children with ASD do not learn to ‘act their age’ by simply being placed with others their age, but rather need to master skills at all the stages in between in order to fully access a class’s curriculum.   Some parents are concerned their children will not learn age-appropriate social skills unless placed in the mainstream.  Alternatively, school can be accessed for special education and various after-school and day care programs and specific social skills groups (e.g., www.socialthinking.org) can be accessed for acquisition of social skills.

 

            In the past, most PDD individuals, and certainly the vast majority of those meeting full autism criteria in childhood, did not grow-up to live independently.  Most ASD individuals who are adults today reside in group homes, some, by choice, with their families.  Some work in supported employment settings or sheltered workshops, often on a limited basis, and those with moderate to severe intellectual disability along with an ASD are primarily in day treatment.  Most of today’s adults with HFA or Asperger’s have trouble holding jobs compared to peers with comparable post-secondary education because of social aloofness, difficulty ascribing to social convention, and a lack of flexibility on the job.  With improved teaching and early intervention, there is reason for optimism.  More early intervened cases may ‘lose’ their diagnoses, more can be expected to be fully or partly mainstreamed throughout schooling, and fewer should have intractable behavior problems due to great frustrations in communicating even simple preferences.  The data in the next decade on adult outcomes should be interesting, indeed. 

     Psychopharmacotherapy for ASDs.  Using psychoactive medicines to treat autism has been around as long as autism (first described by Kanner in 1944).  The standard of care today is to avoid, when possible, the use of psychoactive medicines in the youngest children, especially those under age 5 or 6.  At the earliest ages, the brain is still growing fairly rapidly, making new connections as a result of stimulation through teaching and training.  The effect of neuro-active drugs on these developing neural systems is poorly understood.  Most psychoactive medicines work by changing brain chemistry, which in turn regulates how neurons (nerves) in the brain connect and talk to one another.  There few safety trials in children this age, and so clinicians often are left to rely on adult trials and knowledge of how adult organ systems are affected by a particular agent, even though children may be understood to metabolize a given kind of drug differently from adults.  Psychoactive medicines should be used to treat different signs of ASDs only after behavioral and educational methods to address the problem are in place.  Psychoactive medicines should be thought of as working synergistically with behavioral treatments, not something that can effectively replace them, or must be in place before starting behavioral treatment or education.  A good example is when young pre-verbal children with ASD are easily frustrated and agitated.  A likely contributor can be lack of communicative means, and so some attempts at teaching the child to communicate in words or pictures should be tried before a medication to treat the agitation. 

In the hands of a knowledgeable child psychiatrist or child neurologist, medications can play a crucial role in an overall treatment plan.  Such clinicians rely on research, their experience, and careful observations and discussions with parents to put any treatment plan in place step-by-step.  One or two medicines at a time is a good and usual standard of practice.  ‘Poly-pharmacy’—the use of three, four, five or more agents at once can make it very hard to know what actions are being accomplished by which agents and to monitor side effects.  Different classes of psychoactive medicines are used to treat different symptoms like agitation, inattention, aggression, repetitive movements, and self-injury.  There is no ‘autism’ medication that every child with autism should take.  The medicines in autistic children, just like in adults work in a symptom-specific manner, not a diagnosis-specific manner.  Medicating Young Minds (Elliott, 2006) is a good resource both for parents and primary care professionals.  The table below provides a basic guide to medications that may be helpful to add to a treatment plan after changing behavior with behavior methods has been used to the extent possible.

 Medications for Symptoms of Autistic Spectrum Disorders

All these medicines have potential side-effects. Some side effects are seen for a short period as the child gets used to the drug, some develop over time, or as a dose is increased or another drug added.  Children metabolize many psycho-active medications differently from adults—though most of these drugs are far better studied in adults than children.   Drugs that have worked well in childhood can stop working as the child enters puberty.   It is essentially that any such medications be administered by an experienced expert clinician. 

Guidelines for Evaluating Non-Evidence-Based Treatments

Parents often have trouble knowing which way to turn when it comes to autism treatment:  there are many treatments that claim successes.  ‘Success’ is very dependent upon how it is measured, who reports it, and for whom they report it.  A few old adages can serve as hazard warnings on the road to seeking effective treatment.  First, ‘if it sounds to good to be true, it probably is’.  On the Web, alternative treatments have proliferated.  If a website describes a single treatment that is reported to help some children with autism make better eye contact, others to be less hyperactive, others to speak, and cures diarrhea in others—ask what known medicine can do that?  There’s only one answer—a placebo. 

If you have to send a blood sample, a strand of hair, urine, or even a questionnaire to a laboratory or clinic in the Smoky Mountains or to France, stop and ask why the same test can’t be run at the nationally-known medical center across town.  Beware of ‘logic’ that can cut both ways: If one alternative doctor says that heavy metals in your child’s hair means he has been exposed to too many heavy metals, consider the other alternative doctor out there saying that no heavy metals in the hair means it’s all staying in your child’s body.  An alternative autism treatments that are popular at the moment include the gluten-casein free diet.  More radical are chelation treatments that are designed to remove mercury and other toxic metals—and may also deplete the ‘metals’ like iron and magnesium that a healthy body needs to grow.  A couple of years ago, a popular alternative treatment was IV infusions of secretin to treat  ‘leaky’ guts. The stock of the company that made secretin did better than any child I evaluated who had received it. Diets that removed sugar, red dye, or added B vitamins have come and gone several times. 

Autism and Families

Receiving a diagnosis of autism is a major life event and major stressor.  Coping with the diagnosis (see, Siegel, 1996) and learning to manage the child’s treatment become life tasks.   Parents need to ‘adjust their own face mask before attempting to help others.’  Parents also need help becoming effective consumers of autism services, as well as learn enough about how their child learns to effectively provide ‘special parenting’ (the analog to special education) during the hours per week the child is not in organized treatment (see www.autismjumpstart.org).  Good parenting training should not just teach ‘autism-related activities’, but also support families in experiencing their child’s strengths.   

            Parent Support Groups.  Parent support groups, where parents meet and network about resources for autism with other families are very helpful to some families (e.g., www.autismspot.com).   Many families find support groups most helpful when in the first years after the diagnosis when early intervention for the child is key and disruption to normal family life the highest.  Other families find such resources less beneficial for cultural or economic reasons, or when their child has more difficulties than those of other families they meet as feelings of helplessness and despair may increase rather than decrease.  Other parents prefer the relative anonymity of attending groups and lectures.  Some greatly benefit from mentoring by a parent of an older child who has already ‘been there.  Groups where the agenda is co-opted by one parent or a small clique (who only want to talk about one topic like vaccines or DTT programs) tend to fall apart so a good group needs access to a range of ideas and inputs.    The Autism Society of American (www.asa.org. the oldest autism parent organization in the US) or Autism Speaks (www.autismspeaks.org,   newest and now biggest) are good places to start looking for this type of help on a local level.  The hardest thing for parents of a child with an ASD will be that the ‘spectrum’ becomes more broadly defined with each year’s new prevalence study.  This means not everything you read, perhaps not most of what you read will pertain directly to your child.

Key References

Medical journal articles that can be used as ‘seeds’ that will take you further into related academic studies: 

Akshoomoff N, Pierce K, Courchesne E. (2002).  The neurobiological basis of autism from a developmental perspective. Development and Psychopathology,; 14: 613-634.

Korvatska E, Van de Water J, Anders TF, Gershwin ME. Genetic and immunologic considerations in autism. Neurobiology of Disease, 2002; 9: 107-125.

Bauman, M & Kemper, T ‘Neuroanatomic observations of the brain in autism:  A review and future directions’, Int Jnl Dev Neurosci,  23 (2-3): 183-7.

Brimacombe, M, Ming, X & Lamendola, M ‘Prenatal and birth complications in autism’, Matern Child Health J, 11 (1):73-9, 2006.

DiCicco-Bloom, E, Lord, C, Zwaigenbaum, L, Courschene, E, Dager, SR, Schmitz, C Schultz, RT, Crawley, J & Young, LJ, ‘The developmental neurobiology of autistic spectrum disorder’, J Neurosci, 26 (26): 6897-906, 2006. 

Lawler, CP, Croen, LA, Grether, JK, Van de Water, J  ‘Identifying environmental contributions to autism: Provactive clues and false leads, Mental Retard. & Dev. Dis. Res. Rev. , 2004; 10 (4): 292-302.   

Yeargin-Allsopp, M, Rice, C, Karapurkan, T, Doernberg, N, Boyle, C & Murphy, C, Prevalence of autism in a US metropolitan area,  JAMA, 2003, 289(1), 49-55.

Zhao, X, Leotta, A, Kustanovich, V, Lajonchere, C Geschwind, DH, Law, K, Law, P, Qui, S, Lord, C, Sebat, J, Ye, K, Wigler, M ‘A unified genetic theory for sporadic and inherited autism’, Proc Nat Acad Sci, 104 (31):12831-6, 2007.  

References that have ‘seeded’ major areas of autism research.

American Psychiatric Association (2000) ‘Diagnostic and Statistical Manual, Fourth Edition-Text Revision (DSM-IV-TR)’ Washington DC: APA Press.

Baron-Cohen, S., Leslie, A.M. & Frith, U. (1985). Does the autistic child have a "theory of mind"? Cognition, 21(1).

Lovaas OI. Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 1987; 55: 3-9.

Fombonne, E.  ‘The prevalence of autism, JAMA; 2003, 289:87-89.

Koegel, R L. ‘Pivotal areas in intervention for autism’. Journal of Clinical child Psychology. 2001, 30(1).

Lord, Catherine and McGee, James P. (2001). Educating Children with Autism. Division of Behavioral and Social Sciences and Education, National Research Council, Washington D.C. National Academy Press

Robins D,, Fein D,, Barton M, & Green J. (2001). The Modified Checklist for Autism in Toddlers. Journal of Autism & Developmental Disorders. 31.

Schreibman, L Intensive Behavioral/ Psychoeducational Treatments for Autism: Research Needs and Future Directions. Jnl of Aut Devl Dis,30(5), 2000.

 
            Web sites for Evidence-Based Overviews on Autism/  ASDs

National Institute of Health

http://www.nimh.nih.gov/health/publications/autism/complete-publication.shtml

Centers for Disease Control and Prevention

http://www.cdc.gov/ncbddd/autism/

The Autism Society of America

http://www.autism-society.org/site/PageServer?pagename=newsite_homepage

National Autistic Society (UK)

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=10

Autism Speaks

http://www.autismspeaks.org/

First Signs

http://www.firstsigns.org

Local hospitals, school districts, departments of public health or developmental disabilities will have information on local providers.

          
            More Information About Treatment Approaches

Pivotal Response Training

http://psy3.ucsd.edu/~autism/prttraining.htmlDIR

Natural Environment Teaching

http://www.christinaburkaba.com/NET.htm

Early Parent Training

            http://www.autismjumpstart.org

Social Skills Training

http://www.socialthinking.com/

            Other Key Websites   

Parent Support:   www.autismspot.com

Children’s Software: www.mousetrial.com/autism_software_database.php

Books on Autism: www.specialneeds.com

  Books for Parents and Teachers

Elliott, GR (2006).  Medicating Young Minds: How to Know if Psychiatric Drugs Will Help or Hurt Your Child San Francisco: Stewart, Tabori & Chang.

Koegel, LK & LaZebnik (2005). Overcoming Autism Finding the Answers, Strategies, and Hope That Can Transform a Child's Life. New York:  Penguin Books, USA.

Koegel, R & L (1995). Teaching Children with Autism
Strategies for Initiating Positive Interactions and Improving Learning Opportunities, Baltimore: Paul Brookes, Pub. 

Greenspan, S., Wieder, S. and Simons, R. (1998). The child with special needs: Encouraging intellectual and emotional growth. Reading, MA: Addison-Wesley/Addison Wesley Longman.

Gutstein, S.E. & Sheely, R.K. (2002). Relationship Development Intervention with young children: Social and emotional development activities for Asperger Syndrome, autism, PPD and NLD. London, England: Jessica Kingsley Publishers.

Parks, CC (202). Exiting Nirvana: A Daughter's Life with Autism. Boston: Little Brown.

Schreibman, L (2005).  The Science and Fiction of Autism. Cambridge, MA: Harvard University Press.

Silberman, S. The geek syndrome’, Wired 2001, 9, 12.

Szatmari, P (2004). A Mind Apart.  New York: Guilford Press.

 
            References by the Author (Bryna Siegel, PhD)

            Books for Parents and Teachers

Siegel, B (2008). Getting the Best for Your Child with Autism: An Expert’s Guide to Treatment, New York: Guilford Press.

Siegel, B (2003).  Helping Children with Autism Learn:  Treatment Approaches for Parents and Professionals, New York:  Oxford University Press.

Siegel, B (1996).  The World of the Autistic Child:  Understanding and Treating Autistic Spectrum Disorders, New York:  Oxford University Press.

Siegel, B. and Silverstein, S. (1994). ‘What About Me?  Siblings of Developmentally Disabled Children’ New York: Perseus Press

            Early Screening for Autism

Siegel, B (2004). The Pervasive Developmental Disorders Screening Test-II, San Antonio: PsychCorp/ Harcourt Assessment.