By Daniel Rosenn, M.D.
It would be much easier for all of us if psychiatric diagnoses fell neatly into one category. And psychiatry would be immeasurably less complicated if we had a “scientific instrument” like an MRI, X-ray or blood test which accurately and consistently assigned people into one or another diagnosis. If we only had such a lens, one of the first places we would direct our attention would be at the muddy territory shared by Asperger’s Syndrome (AS) and Attention Deficit Hyperactivity Disorder (ADHD).
Of the rash of childhood emotional disorders, ADHD is probably the most ubiquitous, spreading over perhaps as many as six to seven percent of our children; that is somewhere around 60-80 times the prevalence now commonly ascribed to Asperger’s Syndrome. It is not too surprising that so many children are first diagnosed with ADHD, (occasionally preceded by the apologetic “atypical”) several years before they circle and land on the Asperger’s tarmac.
For the clinician, ADHD has been a well-known, well-described entity for decades. In the 1990s its popularity surged dramatically, with the publication of several teacher/parent scales, computerized Continuous Process Test office programs, media publicity, and a prodigious ad campaign by the manufacturers of psychostimulants. In the ambiguous and ever-shifting arena of childhood disruptive disorders, it was comforting for parents, pediatricians, child psychiatrists, (and Borders Books) to have an entity whose descriptors in Diagnostic and Statistical Manual of Mental Disorders (DSM), were so numerous (22 at last count), declarative, and seemingly precise.
The only problem is that for so many parents of truly unusual and eccentric children, it was like trying to squeeze a size nine foot into a size four shoe. The diagnosis just did not seem to capture the most important symptoms and vulnerabilities of their child. Furthermore, while the ADHD medications were occasionally enormously helpful, and the ADHD interventions in school (seating, chunking [condensing paragraphs of thoughts into a sentence], frequent breaks, added time for tests, decreased homework, etc.) almost always worked somewhat, nevertheless, by mid elementary school, it was becoming clear to many parents that something just didn’t fit.
When DSM IV opened American eyes to the concept of more ably functioning Pervasive Developmental Disorder (PDD), many children with ADHD were reassigned to the Asperger’s category. Almost ten years after Asperger’s Syndrome’s arrival, this diagnosis is now being tried on for size by more and more individuals. A legitimate worry is that perhaps, in our diagnostic zeal, Asperger’s Syndrome will become this decade’s darling, the way ADHD was the last’s, and that too many children are being jostled together under the PDD umbrella.
So how do we tell them apart? First of all, if the truth be told, both Asperger’s Syndrome and ADHD are probably themselves both spectrum disorders, with bleary margins wrapped around core characteristics that, at their heart, cannot be quantified or crystallized. How many difficulties does a child need to have “ significant impairments” in social reciprocity or language pragmatics? At what threshold does Pokemon become a “vertical special interest?” When are the inattention, increased motoric activity and impulsivity “more severe than is typically observed” in an individual of the same age? Please welcome the Australian and Conner’s Scales, their sisters, cousins and their aunts. Although numbers are harvested from these scales, they are subjective and subject to many forms of bias.
Yet, diagnostically, we do the best we can, recognizing that we are making approximations, best estimates, real-life decisions under the heat of battle, as it were. Clearly the label we use has extreme importance, and we need to make every effort to be accurate. Getting the label right is important for many reasons, not the least of which is that diagnosis often drives treatment planning, selection of medication, educational programming, and the way we conceptually and emotionally view our children.
With regard to ADHD and Asperger’s , there is a large overlap in symptomology. In my experience, roughly 60-70 percent of children with Asperger’s Syndrome have symptoms which are compatible with an ADHD diagnosis. In fact, so common are ADHD symptoms in PDD that the PDD diagnosis technically subsumes ADHD. DSM IV dictates that a diagnosis of ADHD not be given along with a diagnosis of Autistic Disorder. Nevertheless, when ADHD symptoms are present in Asperger’s Disorder and respond to psychostimulants, I frequently also specify the ADHD diagnosis to remind care-takers that these symptoms are a prominent part of the Asperger’s picture.
Interestingly, a sizeable portion of children with Asperger’s Disorder (and an even greater number of children with more severe PDD) do not have a favorable response to stimulants like methylphenidate (Ritalin, Concerta, Metadate) or to amphetamines alone or in mixture (Dexedrine, Adderall). Unlike children with more garden-variety ADHD, a large group of children with Asperger’s Disorder, regarding stimulants, either have an absent, muted, or greater adverse reaction (tics, increase in repetitive and perseverative behaviors, etc.) We often speculate that the ADHD symptoms of this group of children are being driven by anxiety, and that perhaps they do not have “classical” ADHD. Possible support for this viewpoint is that medications with anti-anxiety properties, such as the SSRIs (e.g., Zoloft, Paxil, Celexa, etc.) and the atypical neuroleptics (Risperdal, Seroquel, Zyprexa, Geodon) often seem to substantially reduce attentional and motoric symptoms which were unaffected or worsened by the stimulants.
On the other hand, a large number of children who have easily diagnosable Asperger’s Disorder and simultaneous ADHD symptoms are helped enormously by conventional ADHD medications and ADHD environmental manipulations, leading to the assumption that both disorders can co-exist in one individual. This is called co-morbidity, and it is quite common in psychiatric dysfunction. For example, a very large percentage of individuals with Tourette’s Syndrome have co-morbid obsessive compulsive disorder. As it turns out, a large percentage of individuals with Tourette’s Syndrome are also co-morbid for Asperger’s Syndrome.
The problem with the ADHD and Asperger overlap, is that at the more severe margins of the ADHD spectrum and the less extreme margins of the Asperger’s spectrum, clinicians can legitimately argue for one over the other diagnosis. Nonverbal Learning Disability (NLD) is not the only confusing label at the milder side of Asperger’s Syndrome. Many children with significant ADHD can be quite socially aberrant, lack perspective-taking skills, have severe sensory integration problems, be absolutely obsessed with Nintendo, talk constantly and too loudly, have meltdowns at the drop of a hat, be teased, and have no friends.
Yet even in this confusing part of the disruptive disorder stew, where perhaps juvenile bipolar disorder is one click further out than severe ADHD, there are still some guidelines I use to help me sort through the Asperger’s versus ADHD dilemma. First and foremost, Asperger’s Disorder is one of the Pervasive Developmental Disorders. As hard to digest as PDD has been for all of us working the Autistic Spectrum, the term nevertheless clearly and plainly denotes that children who fall into this category have developmental delays that pervade many developmental sectors. Therefore I expect, in fact require, a child with Asperger’s Syndrome to have at least a history of delays and deviations in many sectors (for example, possibly in gross motor, fine motor, sensory integration, attentional regulation, pragmatic speech, socialization, interest and play, affective modulation (e.g., anxiety and mood management), and neurocognition.
It is not that children with ADHD do not have developmental delays, but they do not usually have the variety, the severity, and the contours that children with Asperger’s Disorder characteristically have. ADHD children can have (although certainly not always) poor social skills, but they rarely and consistently have the demonstrable defects in comprehending social reciprocity (e.g., impairments in theory of mind, understanding of complex nonverbal cues, defects in facial recognition, distortion of subtle affective displays, miscomprehension of social context and signaling , and so forth.) Children with ADHD can talk in annoying controlling ways, but the configuration of pragmatic mis-broadcasting that is so tell-tale at any gathering of individuals with Asperger’s Syndrome is really quite consummate and unmistakable. This combination of prosody, dysfluency, pitch and volume, gaze aversion, fascinating but unfunny humor, peculiar word usage, anthropomorphizing of objects, hypersensitivity to criticism, receptive distortion of tones of voice, is certainly highly variable from one individual to another, but it is often definitive in whatever unique madras pattern it appears.
In general, children with Asperger’s Syndrome “have more” than most children with ADHD. They have more perseveration, more stereotypies, more splinter skills, more trouble telling a coherent story, and more neuro-integrative problems.
Children with ADHD can have as bad or worse executive functioning skills as the children with Asperger’s. If their attention is very, very poor, children with ADHD can have as bad a Rey Osterreith. In fact, children with ADHD can often have verbal IQ which are much better than their performance IQs (like the Aspies and NLDers), but more often it is due to very slow processing speed, which drags down the timed tests and deflates the scoring of Performance IQ. Indeed, many individuals with ADHD share a great many neurocognitive features with children with Asperger’s Syndrome, and that is one reason why neuropsychological testing by itself is not the best way to make a diagnosis of Asperger’s Syndrome. Testing is often incredibly helpful in understanding the learning style of the child with Asperger’s, and it is unarguably essential in making a diagnosis of NLD.
Children with Asperger’s Disorder and children with ADHD usually want to have friends. Both groups have poor rite-of-entry skills and both groups play badly. Yet both groups usually fail socially for different reasons. Their recipes for play failures have different ingredients. What often turns on a child with Asperger’s Syndrome is behavior so unusual and idiosyncratic that it can be unfathomable even to another child with Asperger’s. Children with ADHD frequently break rules they understand, but defy and dislike. Children with Asperger’s Syndrome like rules, and break the ones they don’t understand. They are ever alert to injustice and unfairness and, unfortunately, these are invariably understood from their own nonnegotiable perspective. Children with ADHD are often oppositional in the service of seeking attention. Children with Asperger’s disorder are oppositional in the service of avoiding something that makes them anxious. Both groups have serious sensory integration problems, can be uncoordinated and impulsive, and they both very much respond positively to structure and routine. The children with Asperger’s, however, crave order, hate discrepancy, and explode (or withdraw) in the face of violation of expectations. In this regard, they are enormously brittle and fragile. Children with Asperger’s are much more tyrannized by details; they accumulate them, and cannot prioritize them. Children with ADHD also have poor organizational skills, but can be much more fluid in their thinking, more inferential in their comprehension, and less rigid in their treatment of facts that they are able to organize.
Of course these are all generalizations. There is always the child who is the exception. Whatever their profile, whatever their label, both the child with ADHD and the child with Asperger’s syndrome require us to change our assumptions about relationships and our expectations about behavior. They are both demanding, confusing, exhausting, and frustrating. Inside, each is a child who needs tolerance, our informed understanding, our thoughtful interventions, our patience, and our love.
By Gyasi Burks-Abbot
It’s a word that can serve
as adjective,
noun,
verb
in the same sentence.It’s a phrase that can express
awe,
contempt,
regret
depending on context.It’s a place that can be
It’s a tool that can push,
for living,
loving,
dining,
dreaming
with no change of set.
pull,
assemble,
dissemble,
while maintaining its shape.It’s Simple really.
Gyasi Burks-Abbot is an adult with AS.
Discovering Langston was previously published in KONCH magazine.
by Dot Lucci
Spring has sprung. It’s that time of year. Usually transition planning begins now in most school systems. However, it’s actually a little late. By the time you get this newsletter you will already be behind the eight ball as far as transition planning goes!! (Try understanding that if you have AS!!) So you better get busy! There are many steps which make this process run smoothly and help inform people so that everyone is on the same page. In an ideal situation much of this process can happen in a timely fashion and with careful input and planning by all players.
The basic tenet is that you want the receiving team to know the child as well as possible before s/he transitions into his/her new class and/or new school. The child needs to feel as relaxed as possible and as safe as possible and the parents also need to feel comfortable and knowledgeable about the new staff and/or building. If the individual with AS, the parents and the receiving team feel comfortable, then the new school year will begin more smoothly.
The more complicated the transition, the earlier the process and planning should start. If a child is approaching what I call a major transition (preschool to elementary school, K to 1 (in most elementary schools), elementary to junior high, junior high to high school, or from school to school at any grade) then the process should start in January or February. Typical transitions are defined as transitions within the same building with most “players” remaining stable and most classroom experiences being similar. The process for typical transitions can start later in the school year. However, both typical and more challenging transitions involve similar types of tasks.
Both kinds of transition rely on the current team having a good working knowledge of the student and parents. From this knowledge a “working document” is written that describes the student’s needs regarding his learning style and guidelines for teacher style. I have found that there are a few main ingredients that are necessary for teachers to possess for successful inclusion of students with AS. They are: humor – the ability to laugh at one’s self and others in a respectful way; an ability to work with an “entourage of other professionals,” flexibility, good communication skills, good team building skills, sharing their classroom with another adult, and to be a proponent of inclusion and have a liking for “quirky kids”. These attributes usually increase the likelihood of successful inclusion experience.
When the transition is within the same building, usually the special education team knows the receiving teams very well and can match learning and teaching style to the child’s advantage. They can also match environmental structures to the child’s need if necessary. Matching the child’s learning style with the teacher’s teaching style is also to the team’s advantage. Matching kids with teaching styles makes for minimal problems as the upcoming year unfolds. Rarely do teams sabotage themselves by misplacing students!
If there is a major transition, then the sending team needs to be as honest, direct and clear in the “working document” as possible so the receiving team has a clear picture of who the child is and who his/her parents are. This allows them to plan more realistically for his/her move.
If the transition is major, then meetings and observations need to start early. Multiple observations should take place. The student should be observed by the receiving team, in classes that go well and classes that are difficult for him/her. Observations of therapies by therapists are also important so the receiving therapists can see specific interventions being utilized and how sessions are structured. (Familiarity brings safety for kids with AS.) The sending team should also observe classes at the receiving school so they are familiar with what’s next, how things are done, what will work, what s/he will have trouble with etc.
Parents should also meet with the principal and special education team at the receiving school. They should also write a letter introducing their child to the staff. This letter in my experience has taken many forms; one parent wrote it as an analogy to a waiter balancing a tray of glasses. However, it usually is a more directed letter that conveys the child’s strengths, areas of need, likes/dislikes, motivators and the parent’s desires for the upcoming year. What is included is basically whatever the parent wants the school to know about his/her child.
Placing the student with 1 or 2 (or more) familiar peers who are “friends” is important. These students should be kind and accepting and be willing to help the student with AS in the new environment; as well as shed some insight into who s/he is to the new teacher(s). For instance a student with AS may engage in a behavior that is “unacceptable” and the new teacher may not understand it. A student who has been with him before can provide the language if the student with AS is getting agitated. For example, “Tom likes to keep his hat on during class because the lights bother his eyes.” If it is a major transition having “friends” in his class(es) is even more critical.
During the summer it is important for the student with AS to connect with one or two classmates. This can be arranged formally (a structured event/setting) or informally ( a play date or family get together).
During the spring two books are written for the student to assist with the transition. These books should be durable (laminated, heavy paper/cardstock etc.). One is called a Transition Book and the other is called a Goodbye (___grade) Hello (___grade) Book. Both are written by an adult at the sending school with input from the receiving school.
The Transition Book’s purpose is to familiarize the student with the things that are the same and different about the environment and structure. Photographs, a map, and a sample schedule may be some of the things included. Highlights might involve such things as: tables to desks, bathrooms in the room to bathrooms in the hall with multiple stalls, cubbies to lockers, fiive-day rotation to a seven-day rotation, one core teacher to four core teachers etc. The Transition Book is most important for major transitions.
The purpose of The Goodbye/Hello Book is to identify the more personal aspects of a transition. It includes such things as: the student’s progress in concrete terms (i.e. At the beginning of the third grade when you were frustrated you use to hide in your locker. Now at the end of third grade you use your words. You say, “I need a break” or “Leave me alone.” When you are in fourth grade you can still use your words.), what he learned about, what he will continue to learn about, what will be new, who helped him this year and who will help him next year etc.
What’s important about these books is that they help foster a sense of safety between the old and new. If it is not a major transition then the Goodbye/Hello Book and the Transition Book can be combined into one book because the changes aren’t as dramatic. These books should not be given to the student too early as they may increase anxiety. Usually they are read to or the student reads them during the last week or two of school. Then they are given to him/her on the last day, sent home and read again at the end of the summer.
If it is a major transition that involves a new building (elementary to junior high), then it is beneficial if, during the summer, the student has access to the building. Possibly the student could have some portion of his/her summer program take place there. This affords the student an opportunity to familiarize him/herself with the layout of the building, how to use the lockers, get use to the bell system, etc.
Most schools have “Step Up Days” for students going to a new school. This usually involves traveling to the new building with one’s class, going on a tour and familiarizing oneself with the new environment and people. Sometimes an assembly is held by the principal. The student with AS can go on this trip but s/he will need his/her own individual or small group tour as it gets closer to the end of the school year. This tour takes place with a “trusted adult” from the sending school and once at the receiving school they are introduced to “key players.” They experience the change of classes, bell system, observe the hallways and sit in on a class. During this visit, or at a more convenient time, photographs of places and people may be taken to be used in the Transition Book or GoodBye/Hello Book.
The student should know who his teacher will be before he leaves school for the summer (at the pre-K-elementary level) as well as who will be in his class. If known in June then the student should meet his assistant as well and see his new classroom. However, usually assistants aren’t hired until the end of the summer. If the assistant can be identified prior to the start of the school year, then an overlap/training period should take place between the current assistant and the new one. For the upper grades, the student should know which team/cluster s/he will be placed with and meet these teachers prior to the end of the school year. He should revisit classroom(s) and teacher(s) prior to the start of school (August) when other students aren’t there. This visit should occur once the desks are set up; so s/he can see where his/her seat will be and how the room is set up. Some elementary teachers schedule a date for all students and parents to visit prior to the start of school; if this is the case then he/she should attend this date as well.
Older students may want to write/dictate/type a letter to their new teacher that focuses on what they want their new teacher(s) to know about them. This takes whatever form the student wants (CD, video, written work, art etc).
A box of tools, visuals, social stories etc. that were used with the student should move with him/her to the next grade/school (even if they are no longer in use but were once helpful). This box is a history of where the student once was and what tools helped him/her progress to where s/he is now. If after the observations and meetings, new areas of need are identified that will need supports (i.e. changing and showering for physical education classes), then as many of these supports should be created prior to the start of the new school year as possible. They may include any number of things (rule boards, visual schedules, calendars, social stories etc.) Identify areas of potential difficulty and modify if necessary. Also create structures (i.e. homework folders, home/school communication systems, etc) prior to the start of the school year or during the first month or so.
Students with AS need a “safe person” and a “safe place” when they are overwhelmed. During a major transition it is critical that especially the “safe place” is identified prior to or at the very beginning of the start of the new school year. The child may need two spaces, one that is in the room and one outside the room (elementary level). At the upper grades usually the safe place is outside the classroom spaces. This allows it to be built in proactively into behavioral plans. The safe person may be identified as well but s/he may unfold as the year progresses. The person who was identified may not be who the child has chosen, so be flexible. As much as possible should remain consistent from one year to the next regarding expectations, etc. Utilize “tried and true” methods/approaches (behavior, social, emotional etc.) from one year to the next, if still appropriate, and then adjust as the year progresses.
Another useful tool is a “Helpful Hints Sheet”. This handout is passed out at the beginning of the school year to all staff that has contact with the student including regular ed., specialists, special ed., recess and lunch monitors, etc. (with parent permission). This is a two-page document that typically includes the following: 1) a description of what AS is and what it is not (i.e. the aberrant behaviors are not malicious, intentional etc.), 2) a description of the student’s strengths and interests, 3) a description of how the disability affects the child (i.e. attention, sensory issues, organization, etc.) and 4) includes key areas that are impacted and how they are addressed (transitions, unexpected change, fire drills etc.). After giving people a chance to read it (about two weeks), the team chairperson or a primary service provider goes back to each person to check in (i.e. Do you have any questions? Has the information impacted your teaching style, classroom structure, expectations? Can I/team help you in any way? etc.)
Usually, staff training by someone with knowledge of AS should be provided during the summer or at the start of the school year and ongoing to help facilitate the success of the student and the team working with the student.
Make sure the student’s sensory diet/needs are identified in terms of what interventions are calming and which ones are alerting. If the new building does not have an sensory integration space, then begin early to identify how the student’s needs will be met and what will be done to address the problem of space. Prior sensory diets should also be written up and passed on to the receiving team.
Students with AS usually require a lot of planning and modifications. It is important to build into the new IEP consultation time among team members (at least 30-45 minutes a week).
The following sheet, Planning for the Future, was created by Judy Gooen, O.T. It also helps in the transition planning process:
Think back to September; what information do you wish you had been given about your student?
What strategies do you think have been successful?
- in the classroom
- during lunch
- socially
- during PE
- during music
- during art
- with transitions
- with organization
What helps your student to calm down?
What is likely to set your student off?
As you can see there is much to be done to assist the student with AS with his/her transition. Hopefully, these guidelines will help you in your transition planning. So what are you waiting for? There’s much to be done-start taking those photographs!