Does my child / student / patient have Attention Deficit Disorder? Do they have Asperger’s or PDD/NOS? Do they have both, which commonly occurs, or do they have ADHD with Asperger traits, or Asperger’s with ADHD? And is there a learning disability mixed in with all of this?

In the last issue of the LDAQ newsletter I discussed why I think it is so important for the child, the parent and the treating professionals to have a working diagnosis. And whether the parents and educators play a role in getting the diagnosis right. Children need advocates to question whether there may be a problem, to ensure that the child is appropriately evaluated, and evaluated in a timely manner. And most of the time this advocate is the parent.

In this issue I will discuss how a diagnosis is made for the disorders listed above and how, as a parent or professional involved with a child who may meet the criteria for these disorders, your knowledge and advocacy can aid in the diagnosis. As a parent or professional, knowledge of the process can help you to understand how your information is being used and also how and why these diagnoses are not always so clear cut. This is not like diagnosing an illness where we have a diagnostic test device that gives a clear yes or no. These diagnoses are based on the descriptive criteria outlined by the DSM IV (soon to be V). These are consensus guidelines based on what specialists working in the field have agreed upon as the criteria for the disorder based on observational studies and clinical experience.

ATTENTION DEFICIT DISORDER:

As with any diagnostic test, we would like a uniform process to evaluate children who present with inattention, hyperactivity, impulsivity, social marginalization or academic impairment. A validated strategy can minimize under and over diagnosis. The DSM IV-R stipulates that the symptoms be present in more than one setting with clear evidence of clinically significant impairment in social, academic or occupational function.

The diagnosis can be made in one of two ways. Some experienced practitioners are comfortable making a diagnosis based on information provided by only the parent (and child if they are old enough). But the official criteria for diagnosis demands that an assessment of the child’s functioning be done in two settings; ideally the teachers and parents, and in the case of adolescents or adults, by the patient as well.

In an ideal world with no financial restraints this evaluation would be done with an experienced evaluator observing both settings. In the real world, the proxy is a questionnaire given to parents and teachers. There are a variety of questionnaires available and it is important to know the limitations of different questionnaires. Some are very specific to diagnosing Attention Deficit Disorder (Connors test), others encompass a wider range of questions including behavioural and learning issues (Vanderbilt, BADDS). There are others that are not used for diagnosis but only for follow up after treatment is started (SNAP 1V) and one that you may see more of as it is available for free in Canada but is unvalidated as a diagnostic tool (WEISS).

These questionnaires are very expensive to purchase and as the onus to make this diagnosis falls increasingly to the family doctor and pediatricians in Quebec you may see different tests being used. The questionnaires are given to the teacher and parents and reviewed by the health professional with specific test numbers corresponding to mild, moderate and severe attention deficit as well as differentiation of hyperactive and inattentive types. When all informants agree, the diagnosis is easy. But the norm is that they don’t agree. Parents and teachers often report very different things. A number of studies looking at this have shown that many factors affect how a teacher or parent will answer the questionnaire – the level of frustration with the child , the socioeconomic background of the child, the education and experience of parents and teachers, the degree of academic difficulty and social difficulty the child has, how present the parents are in the home. The DSM does not outline how to deal with this disparity but if we all know that this exists, the process of diagnosis is more transparent. As parents, we have to assess ourselves and ask if we are overcalling or undercalling our child’s symptoms because of our own stress or fear of a diagnosis. Teachers need to understand that they need to try to answer the questions as precisely as possible and not allow frustration with the child to cloud the information being given. Just because you do not give them a high score on the questionnaire for ADHD does not mean that there is not some other difficulty that needs to be attended to. For health care professionals, this discrepancy has to be seen as a very normal response. The situations are different, the child may have more difficulty in a noisy classroom, or have more difficulty at home if the home life is chaotic or stressful. And the observers are different people with different relationships with the child. If the diagnosis is still not clear, an evaluation of the child in the classroom by a professional is an option as is a more structured interview with the parent (Vanderbilt structured parent interview).

ASPERGER’S SYNDROME:

The diagnosis of Asperger’s syndrome or any autistic spectrum disorder will be carried out by a team at the hospital based center (you can only be seen in the center that services your geographical area in Quebec and wait times are usually years long) or by a private psychologist who specifically does testing for autistic spectrum disorder. The child with Asperger’s characteristically presents with a cluster of traits. They experience difficulties in social interaction which may include difficulty developing or keeping friends, lacking empathy or social or emotional reciprocity. For example, when playing with a friend they may not naturally seek out what the other child likes to do or ask about the interests of their friends. They often have interests that may be very focused or repetitive – for example, an unusually big interest in a certain topic like trains or sports statistics or geography. Although their language skills are not delayed they do have communication difficulties (they don’t understand complicated explanations or subtle body or verbal clues). Their speech may be unusual in its cadence and also in the use of more adult like words or ways of speaking. They may also have motor and sensory perception issues. There is often difficulty writing well, doing sports activities or any other activity requiring good fine or gross motor skills. They may be bothered by noises or textures of foods as they have difficulty filtering their sensory input. These children often seem very bright as they may read very early, be capable of memorizing easily and this can make it very difficult for parents to accept that there may be a developmental issue that needs assessment.

It is estimated that 1% of the population at 8 years of age have some type of autistic spectrum disorder (Close 2012). The diagnosis of Asperger’s is unfortunately often made late, on average between 6 and 11 years of age. I say 'unfortunately', because parents notice abnormalities, on average, at 24 months, and the socialization interventions have optimal effect in the younger child with maximal neuroplasticity. Studies demonstrate that these children can learn to have more reciprocity in play and communication if they have access to these interventions at an early age. The interventions consist of play sessions with neurotypical children where they learn and practice reciprocal play and communication. For example, they practice taking turns while playing, giving positive feedback with words but also facial expressions to their playmates, sustaining appropriate eye contact when it is required for communication, giving context to their conversation and role playing in less structured play.

The evaluation of a child where Asperger’s is being considered includes an assessment by a team which may include pediatric psychiatrists or psychologists, speech therapists and occupational therapists. The gold standard combines the information obtained from the Austism Diagnositic Interview Revised (ADI-R) where the parents are interviewed and many questions about development including speech, social interaction, milestones, etc., are evaluated. As well, an ADOS (Autism Diagnostic Observation Schedule), which is an observation of play and conversation with the child, will be done. A complete assessment will also include a neurological and genetic assessment to rule out other possible diagnosis. (Matson 2008)

Does this mean that my child might need both of these evaluations? The majority of children with Asperger’s syndrome have an underlying attention deficit (disregulation of attention which includes over attention) so they will need an evaluation of both. Many children with Asperger’s syndrome are initially diagnosed with Attention Deficit Disorder, as they can be difficult to differentiate at a young age without a full assessment, including an observation of play by an experienced professional. When a parent has a concern regarding their child’s social interaction and communication or special interests it is crucial that this is brought to the attention of the treating professional as the diagnosis of Asperger’s (or Autistic Spectrum Disorder as it will soon be called) can be easily missed (Close 2012). And many of these children have learning disorders that are strongly associated with either Attention Deficit Disorder or Asperger’s Syndrome. If these can be specifically diagnosed, they can be helped at school and develop a much more positive sense of themselves.

Understanding how these disorders are diagnosed demystifies the process and allows parents to know what to ask for and what to expect in the evaluation. In the next article I will discuss the different types of learning disorders that are often associated with Attention Deficit Disorder and Asperger’s Syndrome and when neuropsychological testing (the testing usually used to diagnosis learning disorders) is necessary. I will also discuss how the criteria for diagnosing Attention Deficit Disorder will change with the new DSM V this year and how the diagnosis of Asperger’s will change as well. If you are interested in looking more closely at the diagnostic criteria there are useful sites listed below.

1.     Close, H. Pediatrics Vol 129 No2 Feb 2, 2012

2.     Matson J, Wilson J. Research in Autism Spectrum Disorders Vol 2, Issue 2,288-30, 2008

3.      Wolraich, M et al. Assessing the Impact of Parent and Teacher Agreement on          Diagnosing Attention-Deficit Hyperactivity Disorder J Dev Behav Pediatr 25:41–47, 2004

Related Websites: 

 1.     A thorough discussion of screening and diagnostic testing tools for autistic spectrum disorder. http://www.autismsocietycanada.ca/DocsAndMedia/KeyReports/Miriam_Best_Practices_guidebook_english.pdf

2.     Online DSM IV-R http://www.psyweb.com/DSM_IV/jsp/dsmab.jsp

Parenting the child with difficulties is a demanding and challenging task. When your child does not clearly fit into any one diagnostic box, it becomes even more difficult. Is there really anything wrong? Will the therapies suggested for the possible diagnosis’ work for my child since they are atypical or do not meet all of the criteria? As a parent of a child with difficulties and a physician who works with children, I would like to explore issues around parenting, diagnosing and living happily with our children no matter what their difficulty or how well they fit into our diagnostic boxes. Their difficulties may be with behavior, friendships, impulsivity, underachieving at school or more likely a mix of these issues that results in them not making their way successfully through home, social and school settings.

The children that I am describing usually have symptoms that fit into a number of diagnostic categories-attention deficit/hyperactivity disorder, Asperger’s/PDDNOS in the autistic spectrum, behavioral difficulties such as disruptive behavior disorder or conduct disorder, anxiety and/or specific academic and social learning disabilities. In the upcoming months, I would like to explore the issues of diagnosis in children with features of one or a number of these difficulties. Specifically, we will look at:


-Do our children really need a diagnosis?  What good does it do?  Might it be harmful?

-Does it matter which box (or diagnostic category) they are in?

-What are the criteria for diagnosis? Do children usually fit into more than one box?

-What are the parenting, teaching and treatment implications of these decisions?

As the parent of a child that straddles a number of different diagnostic categories (attention deficit, asperger’s, behavioral difficulties), I can say without any hesitation that the years when we knew that our child had issues – but we didn’t know exactly what - were the most painful, difficult years of his and our lives. He seemed very bright but he had an extremely hard time functioning in a regular class. The teachers were always angry with him and days full of positive reinforcements and punishments didn’t seem to help. When he finally received the diagnosis of Asperger’s and ADHD it changed his life – and ours. With a diagnosis we were able to really understand why he was difficult and why he reacted in the ways that he did. At school the teachers thought he was bright but “bad” and “lazy” or “spoiled”. Once we knew his diagnosis we could read about how and why his brain was working differently, what associated difficulties he was likely to have, and what we could do to help him. When his specific social and learning difficulties were identified, we were able to develop a new understanding and create more effective interventions. Even more importantly, he started to understand his difficulties and let go of the feeling that he was a bad kid.  He began to feel good about who he was as he would identify his strengths and build upon them.  But none of this happened until we had a diagnosis – and it took years when it didn’t need to.

As a medical doctor, I see this pattern over and over again. Patients often do not receive a diagnosis until they are in crises, which are often related to bullying, anxiety, drug use or depression. Even though the signs had been present for years, somehow a diagnosis was never made. Maybe the physician thought the diagnosis of “behavioral difficulties” or “bright but inattentive’ or some other incomplete diagnosis was sufficient, maybe the parents thought the problem was less severe since it did not require a “diagnosis”. But for the child, school becomes more and more difficult and unfriendly, making or keeping friends becomes impossible, and bullying and exclusion become the norm. And all this time, we have missed the important window of neuroplasticity where the interventions are most effective for any of these diagnoses. 

Although making a diagnosis may seem like a theoretical issue (something that is not most important when you are in the midst of parenting or working with a child with difficulties), it is important to remember that understanding and accepting that a diagnosis is needed may be the first step in moving forward with your child's well-being. Speaking to the fear of over-diagnosis, here are some facts about the accuracy of testing for attention deficit and asperger's / PDD-NOS, with or without learning disorders: 

-The screening tests that we have for ADHD and Autistic Spectrum Disorder will pick up more than 90% of the children with the difficulty (sensitivity of the test) and will be negative more than 90% of the time when the child does not have the disorder (specificity). Very few medical tests are better than that when used alone. With involved parents and good clinical acuity of the treating professional these numbers will approach the high 90’s. 

-The child who has difficulties, but does not fit exactly into one box should receive a tentative diagnosis and be followed by a team. Further evaluations should then be carried out if the problems persist or change-- this will improve the predictive value of the tests. 

-In studies looking at children diagnosed with ADHD or ASD (Asperger’s or PDD-NOS), the diagnosis is rarely “wrong” – there may be children with ADHD who are eventually diagnosed with Asperger traits in addition to their ADHD or have other co-morbid diagnoses made later (anxiety disorder, behavior disorder, etc.), but the fear of over-diagnosis does not appear to be the case, even when children are followed over time.  

Unfortunately, even with the information from the studies discussed above, there are still some parents who either do not see the importance of diagnosis or who are afraid of what will happen once their child is diagnosed. Also,  there are physicians and/or professionals who do not understand the difficulties that you as a parent are  seeing day to day. It is a hard hurdle for all of us to accept that a child has a difficulty. They are so wonderful in so many domains and labeling them somehow feels like we are taking away from this wondrous and creative beauty. As parents, it also makes us feel inadequate or like failures.  But, the unfortunate thing is that our children are going to school every day to large classes within a fairly unforgiving environment and will be beaten down if we cannot help them and help those around them to understand how their brains might be working differently from the other children who follow the rules better, learn more typically, or make friends more easily. If we can view diagnosis as opening doors and creating opportunities for our children, instead of as a heavy weight for them to carry, then we can become better advocates for them by ensuring that they have the testing, diagnosis and strategies / interventions that they need to be their happiest.

Next month, I would like to discuss what screening tests there are for ADHD, Asperger's, PDD-NOS and specific learning disabilities. How good are these tests?  What testing do we actually need to undergo and how are our views and diagnostic criteria changing with new medical research that enables us to see the diferences in brain function in different children.