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Diagnosis – Children and Adolescents

I think my child has Asperger Syndrome. I’m wondering...

Q:  What are the common traits and characteristics of someone with Asperger Syndrome?

A:  The Diagnostic and Statistical Manual (DSM) of the American Psychological Association categorizes Asperger Syndrome as an Autism Spectrum Disorder (ASD), which falls under the general category of Pervasive Developmental Disorder (PDD). All ASDs share the following three major characteristics: (1) problems with communication or language, (2) poor social skills, and (3) a restricted range of interest and/or repetitive behaviours.


Q:  Does Asperger Syndrome (AS) affect a person’s intelligence and/or cognitive functioning?

A:  The DSM-IV criterion for Asperger Syndrome excludes those with a cognitive delay from the diagnosis. Although no cognitive delay will be present, individuals with AS can demonstrate significant differences among skills and intellectual strengths, which can be quite confusing. However, it is not uncommon for someone with AS to have superior abilities in some areas and significant deficits in others.


Q:  Could other family members also have Asperger Syndrome or another related neurological disorder?

A:  Yes! Asperger Syndrome, as well as other ASDs, is believed to have a genetic basis. This means that other family members across generations may present similar symptoms or have a diagnosis within the family of ASDs. If you know or suspect that there is a history of ASDs or Asperger Syndrome in your family, this can be an indicator that your suspicions may be right and it may be helpful to mention it to your doctor if you decide to pursue a diagnosis.


I’m considering getting my child diagnosed. I need to know…


Q:  How do I go about getting a diagnosis?

A:  The first thing to do is visit your family doctor. If you do not have a family doctor you can find one by visiting the link on our website for the College of Physicians and Surgeons of Ontario. You can then ask for a referral from a GP or family doctor to a specialist in the field. You may want to investigate local children’s mental health agencies to see if they provide diagnostic assessment for Asperger Syndrome. On our website, we also provide a list of private practitioners that can perform diagnostic assessment.


Q:   What can I expect my family doctor to know about Asperger Syndrome?

A:  Your family doctor may not have heard of Asperger Syndrome, although they may know about related disorders such as Autism. You can bring some of the material about Asperger Syndrome from our website to your next appointment to help your doctor understand more about your concerns, help you find a diagnosis or any other Asperger Syndrome related issues that may arise.


Q:   Do I have to pay for a diagnosis?

A:   Getting a diagnosis can be done privately or it can be covered by OHIP. The   reason some people choose to get a private diagnosis is that there is a shortage of covered medical professionals who diagnose Asperger Syndrome, and as such there is often a significant wait to get diagnosed. Search the ASO online resource database to find a private practitioner.


Q:   What are the types of professionals that can diagnose AS?

A:   A formal diagnosis can only be given by medical doctors (i.e. GP’s, paediatricians, psychiatrists) and psychologists. Some people choose to have a social worker, speech and language pathologist or another related professional provide a preliminary assessment that will allow them to give their opinion on the likelihood that someone has Asperger Syndrome. These opinions cannot substitute a clinical diagnosis but can help determine whether seeking one would be worthwhile. Search the ASO online database to find a private practitioner in your region.


The waiting list for getting a diagnosis is long. In the meantime I want to consider…


Q:   What can I do while I wait to be seen for a diagnosis?

A:  The easiest thing to access and review while waiting for a diagnosis is literature on Asperger Syndrome. There are a growing number of books and workbooks that focus on many issues related to Asperger Syndrome.  They cover broad and specific topics and some may also include activities to try with your child. Another option is to try and find organizations or programs that will not require you to have a formal diagnosis to receive services or support. Attending workshops about Asperger Syndrome  is another great way to learn more about how you can support your child, both pre and post diagnosis. You can begin your search for agencies, programs and readings on our website.


Q:  What is the benefit of having my child formally diagnosed with Asperger Syndrome?

A: Getting a diagnosis for your child is understandably a difficult decision. Many parents fear the effects that labeling their child will have, both now and in the future. However, by getting the correct diagnosis you will be able to advocate for your child to get the treatment and services they need, including educational accommodations. Getting a diagnosis can help ensure your child’s success today and increase the likelihood of their future wellbeing.


Q:   How will an AS diagnosis affect other previous diagnoses my child has received?

A:   A different diagnosis given prior to one of Asperger Syndrome may not account for all the behavioural, learning and emotional characteristics of Asperger Syndrome. Sometimes these diagnoses serve to address some of the challenges your child experiences, however a diagnosis of Asperger Syndrome will hopefully be more inclusive of all symptoms and rule out the need for the previous diagnosis. Other diagnoses may not be covered by the Asperger Syndrome diagnosis and may be maintained along with a primary diagnosis of Asperger Syndrome.


Q:  What can I expect from the assessment process?

A:   The assessment process can vary and will depend on the person performing it as well as the individual being assessed.  Depending on their experience with Asperger Syndrome, some doctors may feel less confident than others to make a diagnosis immediately, while others will feel very confident to identify and diagnose Asperger Syndrome much sooner.  Parents will often be part of the assessment process if the individual is a minor. The assessment process can involve interview(s) and questionnaire(s). The assessor will want to know about developmental milestones and the concerning traits or characteristics being presented. Questionnaires or standardized tests can be given to assess things like intelligence or language abilities.


Q:  What do I need to do prior to my child’s assessment?

A:  Any previous assessments your child has had should be brought with you, or mailed beforehand to the doctor doing the assessment. It’s also useful to begin collecting records and thinking about your child’s developmental milestones. You can make a chronological list of events, paying careful attention to moments that triggered any concern or led you to suspect something unique about your child. You can also make a list of the current characteristics, behaviours or other problems that are concerning you. Finally, write down any questions you want to ask the doctor. If you don’t know what to ask, try reading up on Asperger Syndrome before the assessment appointment. Some of the things you read may trigger questions as they relate to your child.


I’m getting my child assessed. While I’m there I want to know…


Q:   What can I do if my child does not do well in testing situations?

A:  There are many reasons children and adults with Asperger Syndrome do not handle testing situations well. These include: (1) sensory distractions, (2) heightened anxiety, (3) inability to focus, and (4) difficulty processing what they are being asked to do. Be sure to tell the person doing the assessment of any problems and share any strategies that may help in such situations.  A well-prepared assessment should contain the opinion of the diagnostician regarding the congruency between the results and your child’s abilities.


Q:  How important is it to have a diagnosis of Asperger Syndrome rather than Autism Spectrum Disorder (ASD)?

A:  This really depends on the age of your child.  It may be difficult to determine whether the symptoms they are presenting are specific to Asperger Syndrome before the age of 5. What’s important at this stage is the identification that there is some form of ASD.  Narrowing in on the correct diagnosis can take place in later years and will help secure the best and most appropriate care and services for your child. Another point to note is that there has only been broader awareness of Asperger Syndrome in recent years, so those diagnosed ten or more years ago may have had greater access to services and supports with a diagnosis of ASD. Today however, schools and other organizations are familiar with Asperger Syndrome and no longer require a diagnosis of ASD in order to provide services.


My child was assessed and has been diagnosed with Asperger Syndrome. The first things I want to know are…

Q:  Should I tell my child that they have Asperger Syndrome?

A:  The decision to tell your child of their diagnosis can be a hard one that most parents struggle with, especially when children are very young. When thinking about whether or not to tell your child it is important to consider what they may already know, who else in their life knows and how it may benefit them to know about their diagnosis. Generally it is better for children to know about their diagnosis as soon as their level of maturity allows them to comprehend it, although the timeframe will differ for each child. Ultimately each child is unique and it is up to the individual’s parents to determine if they are ready emotionally and cognitively to understand what having Asperger Syndrome means.


Q:  What should I do if I don’t agree with the doctor’s diagnosis?

A:   Getting a second opinion is your right. Most doctors will encourage you to do so if that is what you wish to do.


Q: Should I have other assessments done after the diagnosis?

A:  It really depends on the benefit it would have for your child. Further assessments can sometimes be beneficial for gathering more specific information about your child; however they can also be overwhelming for both parent(s) and child. Getting further assessments can also delay the commencement of active treatment and supports for your child. When considering additional assessments it is important to consider what purpose they have and how they could benefit your child’s treatment plan.


Q:  Do I need to tell others about my child’s diagnosis? And if so, who?

A:  It is not necessary for you to tell anyone about your child’s diagnosis, however it is strongly recommended that you disclose it to all professionals involved in your child’s life. This includes teachers, doctors, social workers, therapists, speech and language pathologists, occupational therapists and any other professional working with your child. If your child is not significantly impacted by Asperger Syndrome you may not have to tell other individuals involved in their life (babysitters, camp counsellors, extended family, etc.), however knowing about the diagnosis may provide them with a better understanding of your child and improve their interactions with them.


Q:  What can I do to support my child with Asperger Syndrome?

A:   The first thing you need to do once your child has been diagnosed is figure out what Asperger Syndrome means to your child. Asperger Syndrome presents differently in each individual so it is important to know how it affects your child. Identifying the most pressing issues relevant to your child (i.e. sensory, anxiety, emotional management) will go a long way in alleviating frustration or feeling overwhelmed with information when developing and starting a plan for intervention and support. You can also research and learn the methods of intervention used with children with Asperger Syndrome that target the issues you identify. Share these with any professionals involved in your child’s life and apply them to all interactions with your child. You can find much of this information on the Internet and in books, many of which are available through links posted on our website. It is also a good idea to seek parent support groups to connect with other parents who have children with Asperger Syndrome, gain insight into the disorder and learn from the experiences of others. Searth the ASO online database to find resources in your region.

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