Adult Autism Assessment and Diagnosis

Today I was asked if using the GARS-2 (Gilliam Autism Rating Scale-Second Edition) was enough for an adult diagnosis of autism or Asperger's Disorder. I have a new copy of the GARS, and have used it many times in the past, especially when working in California. With children we would do a dual interview, two professionals asking questions, and we would score separately to make sure there was evaluator agreement. The GARS is used for individuals from age 3-22, and most of us would use a version of it for older individuals. But in British Columbia the GARS simply isn't good enough.

Usually a diagnosis of either autism spectrum disorder, or Asperger's Disorder, sometimes called Asperger's Syndrome , in adults can be complex. It requires not just using a checklist/interview like the GARS, but also ruling out the many other possible disorder that could be causing the symptoms of concern. I usually do this with a structured personality assessment and structured mental health history/health history.

In BC, with children and adolescents (teens) who are suspected of having autism spectrum disorder or Asperger's (yes, I know they are now considered to be on one single spectrum, however many individuals still find it useful to distinguish between these two disorders) we use the ADOS (Autism Diagnostic Observation Scale) and the ADI-R (Autism Diagnostic Inventory). These are considered the gold standard here in BC, and are a required part of any autism assessment that will be accepted by either a school district or the Ministry for funding. So, I try to follow these guidelines as much as possible.

Often people need a diagnosis for "legal reasons." For instance, they may require a diagnosis to obtain services, or to make a tax credit claim, or sometimes they are having social problems at work and a diagnosis is part of keeping their job and getting appropriate accommodations. As you might suspect, when this is the case we need a very comprehensive assessment. One that rules out other possible causes for their symptoms, and one that shows both their strengths and weaknesses so we can make specific accommodation recommendations. That's why a simple check off list of symptoms doesn't make for a good diagnosis!

A diagnosis of Asperger's Disorder or autism in an adult takes several hours of face to face time, the collection of historical information (much of the diagnosis is based upon behaviours and concerns at an early age) and some period of time to observe the individual doing tasks that we consider important markers for the disorder.

For more information you are welcome to contact me in my office at 778.998-7975. There is a short waiting period for adult and child assessments, but usually you can be seen within a week to ten days. For more information visit my website at www.relatedminds.com

I have offices in both Burnaby and Vancouver, British Columbia.

What does research say about treatments for adolescents and young adults with Autism Spectrum Disorder and Aspergers?

A 2012 publication"Interventions for Adolescents and Young Adults with Autism spectrum Disorders" was published by the Agency for Healthcare Research and Quality. It is an excellent report, 374 pages of data, and would be useful to any parent of a young adult, and should be part of the collection of literature in any school district, private practice or mental health program that works with young adolescents (teens) or young adults with Asperger's Disorder/Syndrome.

The full report can be found here: http://www.ncbi.nlm.nih.gov/books/NBK107275/
For instance, many school districts provide "Music Therapy" for student's with Autism Spectrum Disorder or Aspergers. Often this is provided by a "Registered Music Therapist" here in British Columbia.  How does this government report look at music therapy for students with autism?

" 2 poor-quality case studies. Some gains in social skills reported using unvalidated and largely subjective measures. No comparison groups or measures of treatment fidelity; participants not clearly characterized; assessors not masked; differences in concomitant interventions not reported.”

If music therapy is being offered to your child, but no behavioural program, small group social learning group (using materials such as ABA for some or "social learning" programs such as Michelle Winners for others), you need to know that the evidence for using music therapy with autism is weak.
While the report is long it can be downloaded in PDF format and read on your computer or iPad screen. At least those professionals designing, approving and supervising the programs out children use should be familiar with this compendium of research and it's implications as to where to put our effort, money and hearts when dealing with our children, students and clients.

The study comes to this rather bleak conclusion:

"Few studies have been conducted to assess treatment approaches for adolescents and young adults with ASD, and as such there is very little evidence available for specific treatment approaches in this population; this is especially the case for evidence-based approaches to support the transition of youth with autism to adulthood. Of the small number of studies available, most were of poor quality, which may reflect the relative recency of the field. Five studies, primarily of medical interventions, had fair quality. Behavioral, educational, and adaptive/life skills studies were typically small and short term and suggested some potential improvements in social skills and functional behavior. Small studies suggested that vocational programs may increase employment success for some individuals. Few data are available to support the use of medical or allied health interventions in the adolescent and young adult population. The medical studies that have been conducted focused on the use of medications to address specific challenging behaviors, including irritability and aggression, for which effectiveness in this age group is largely unknown and inferred from studies including mostly younger children."

Another example of  overused interventions are sensory interventions. Some schools are full of these programs, with specialized rooms that children are taken to when they are having behavioural or emotional difficulty. Many times this is the primary intervention on an IEP for a child, in spite of the lack of supportive research for using these techniques. Here is what the American Paediatric Association says:

"Sensory-based therapies using brushes, swings, balls and other equipment are increasingly used by occupational therapists to treat children with developmental and behavioral disorders. However, it’s unclear whether children with sensory-based problems have an actual disorder related to the sensory pathways of the brain, or whether these problems are due to an underlying developmental disorder. In a new policy statement, “Sensory Integration Therapies for Children With Developmental and Behavioral Disorders,” published in the June 2012 Pediatrics (published online May 28), the American Academy of Pediatrics (AAP) recommends that pediatricians not use sensory processing disorder as an independent diagnosis. When sensory problems are present, health care providers should consider other developmental disorders, including autism spectrum disorders, attention deficit/hyperactivity disorder, developmental coordination disorder and anxiety disorder. Occupational therapy with the use of sensory-based therapies may be acceptable as one component of a comprehensive treatment plan. The AAP recommends pediatricians communicate with families about the limited data on the use of sensory-based therapies, and help families design simple ways to monitor the effects of treatment and discuss whether the therapy is working to achieve their goals for their child. Occupational therapy is a limited resource and families should work with pediatricians to prioritize treatments based on problems that affect a child’s ability to perform daily functions. - See more at: http://www.aap.org/en-us/about-the-aap/aap-press-room/pages/AAP-Recommends-Careful-Approach-to-Using-Sensory-Based-Therapies.aspx#sthash.ORoTzKDN.dpuf

So what is a parent (or spouse) to do? 

First of all, do not rely on the overly optimistic reviews from practitioners. Many school and mental health facilities use the least trained ( meaning cheapest) staff available to work with these students and clients. Start by making sure you have a licensed or registered professional involved. High Functioning Autism and Asperger's Disorder are neurologically based. In many ways they are first and foremost language disorder and disorder of executive function - inability to move from one subject to another, accept changes, "read" other people, demonstrate mental flexibility and control their emotions. These are issues familiar to both behavioural psychologists and speech and language pathologists. (Remember, there is a reason the leader in this field, Michelle Garcia Winner, is a speech and language pathologist!) Start with experts in the behaviours you are most concerned with. Not with a "program."

Next, develop a clear outline of what you want to deal with, what are the problematic symptoms, deficits and concerns.

Then develop a program to address those.

What this study clearly shows is that too much effort is spent on ancillary treatments, that happen to be available, or for which their is a "workbook" that a para-professional can follow. Treatments address deficits and concerns, and whether it be in an IEP meeting (individual educational Plan) or a one to one meeting with your therapist, an appropriate assessment is the best way to find a path to appropriate treatment!

For older teens and young adults these group sessions are not available, and often inappropriate, as higher functioning teens and young adults are more likely than not to be suffering from co-morbid disorders such as anxiety, stress, depression and low self esteem. These, like many of the specific symptoms, can be addressed individually use adaptations of familiar, well researched and evidence based treatments.

While the problem of poor research for treatment of autism and Aspeger's is real, there are still many treatments which we know work, and work well, for most people, and if properly modified by a mental health professional who is familiar with autism spectrum disorder in children, adolescents and adults, the odds start to change.

For more information on diagnostic assessments for autism spectrum disorder (I am an approved provider with Autism Community Training -ACT, and a member of the RASP provider's list) which I provide as a private practitioner, contact my at 778.998-7975. My website is www,relatedminds.com and I have offices in both Burnaby and Vancouver. Most testing is done in Burnaby, as that is where most of the testing materials are. 

My waiting list for autism assessment for children over 6 through adults is fairly short, about 10 days to start the process.

I also provide therapy for adolescents/teens and adults with Asperger's Disorder and Autism Spectrum Disorder.