What Treatments are there for Adults with Asperger's Syndrome or Disorder?

I am often asked: "What Treatments Are Available for Adults with Asperger Syndrome?" Many adults who have been having low level but continuous problems socially, at college, work or in their own family go on line and seek out a diagnosis. Often they complete a check list somewhere and it tells them they MAY have Asperger's Syndrome or Asperger's Disorder. Of course, one of the problems is the short check list was designed to do nothing more than search out signs and symptoms of Aspeger's, and honestly, there are a lot of people who you see most of those signs or symptoms in. A real diagnosis would have taken a broader view, and looked at alternative causes for these symptoms. This process is called "differential diagnosis" and a licensed psychologist or medical doctor familiar with Asperger's would have ruled in or out several very similar disorders. But, at any rate, you have completed the checklist, it says Asperger's and your symptoms are of concern. Many people wonder why someone would even go through an examination to get a diagnosis, because they aren't sure what "therapies" are even available. For children with Asperger Syndrome (AS) and other forms of autism usually there is a fairly common set of treatment interventions available through the school district. This might include physical, occupational and speech therapy along with some kind of social skills (social reciprocity) training and behaviour support. But for adults it's a very different matter. Most people start treatment because of some event that is currently going on in their lives. They may have had difficulty at school with more complex subjects, and their difficulty is related to Asperger's tendency to limit cognitive flexibility. This can be addressed through psychoeducation, practice and feedback. Others may be having problems at work. They could be similar to those just mentioned, or include time management issues, focus and attention problems very similar to ADHD, or social interaction issues. All of these are addressed through fairly common techniques, and the issue of social interactions, or social cognition, is usually addressed through psychoeducation (readings and discussions about how the brain works in social interactions) and modelling, then practice in using social cognition skills. For the individual with Asperger's this is a very different issue than "social skills training," which many people are pointed to by therapists who are not familiar with the complexity of Asperger's Syndrome or Disorder. As I always do, let me mention the work of Michelle Garcia Winner here. Here web page, www.socialthinking.com explains this issue really well. When adults come to my offices in Burnaby or Vancouver for treatment of aspects of their Asperger Syndrome I often recommend trying to look over Michelle's materials to get a firm grip on what exactly is going on when they have difficulty in social settings. Family issues is another point that often brings individuals with Asperger's Syndrome to the office. Sometimes we work together one-to-one on understanding and improving communications, sometimes we work on things as simple as arranging appropriate schedules and interaction times. Couples often need relationship counselling as well. And of course, educating your spouse can make a big difference. This is another place where a trained professional comes in handy. Finally, many individuals come in for the same symptoms and problems anyone might come to a therapist or psychologist for. They may have anxiety issues, phobias or depression. For these issues we often use an adapted form of CBT - Cognitive Behavioural Therapy to address the thoughts and feelings of loneliness, depression and isolation. Of course others come in because of legal issues after work place incidents, or to help get social services and so on. Some individuals need help with daily living skills like keeping a bank account, eating properly, exercising and finding a job. Others with Asperger's have anxiety because of their limited ability reading social cues at work where they may be a department head, director of research or university faculty. Asperger's is a spectrum disorder and individuals come in with a spectrum of issues they can use support and help with. These are just a few of the reasons individuals come to my office seeking help with Asperger Syndrome symptoms. For more information on the services I provide please feel free to contact me, or check out the information on my web page at www.relatedminds.com

Adolescents and Young Adults with Aspergers and High Functioning Autism

Treatment for adolescents (teens) and young adults with Asperger's Disorder or High Functioning Autism are few and far between. One of the reasons is that many of these individuals are fairly high functioning and reluctant to join in groups, so, we have a really hard time outside of major/major metropolitan areas forming groups. What we often rely upon is individual therapy and coaching for these individuals. What does individual therapy consist of? Well, it usually starts with psycho-education. That is, learning the ins and outs of the disorder. Often this means learning it from the perspective of others, because one of the major difficulties people have is getting and understanding the perspective of others. While there are a lot of materials and training programs out there for younger teens and children with Asperger's Disorder there really aren't many for older teens and young adults. Still, we are able to make use of some of the materials from Michelle Garcia Winner which can easily apply to and be adapted for young adults and the work place. One set of materials we often use is her "social Behavior Mapping" method, which refocuses their attention on how they are perceived by others. This lack of "reciprocity" or use and understanding of "pragmatic language" is a common source of difficulty. An example of this is the individual who, while at work, is asked to sign a get well card for the office manager's daughter, who he has never met. While everyone else in the office signs the card as it is passed around, this individual, let's call him Tom, instead of signing says, "Well, I don't really know her." While this is true, and often family, friends and even therapists spend a lot of time arguing about the "truthfulness" of such statements, it becomes a work issue because such a reaction and comment is simply unexpected in the workplace, where social rules instruct you to sign the card, and if you can't think of anything just....sign your name and write "get well." How many arguments about this I've had with clients with Asperger's I can't tell you. Like Tom they know the social norm, they could recite it to you, but don't implement it because they need to stick to the facts of the situation. The big leap for them is to understand 1 How other's see their actions; and 2) Learn how to use the reaction of others to monitor and adjust their own behaviour. Something that just doesn't go on often enough. Michelle's work addresses these issues, not by going right to a problem area and ...well "sticking a finger in someone's eye while pointing out their problem." Instead we address the learning and thinking process as a who, and give students simple techniques to support their use of appropriate social interactions. Therapy for adolescents, teens, and young adults with Asperger's Disorder also often focuses on some of the same themes you would expect anyone their age to be dealing with. Individuals with Asperger's and high functioning Autism almost always tell me they want to develop relationships, make friends and become close to others. But because of these social cognitive deficits, like the one described above, this can be difficult task. This isolation can lead to anxiety, stress and depression just as it could with anyone else. So often these individuals with Asperger's Disorder and high functioning autism are often seen for the same reasons anyone else is seen. Therapies that are effective with others, such as Cognitive Behavioural Therapy 9CBT) is often just as effective, and can be easily adapted to make use of external and visual support systems. Finally there is the use of self-help books. Often individuals with Aspegers Disorder or high functioning autism can't afford the services of a psychologist or other licensed health professional. For those individuals a coaching mode using self help / self directed materials may be a good place to start. One book I often recommend, especially for young adults entering college or the workplace, is "Social 'Thinking at Work," again, by Michelle Garcia Winner. This is an excellent book, written especially for those with Aspeger's or high functioning autism. I would suggest this is one of the best books around for young adults, and recommend it highly. You can call around and find it at several bookstores, find it through the "suggested readings" link on my web page (at www.relatedminds.com) or borrow it through your local library. Checking out Mitchelle's web page at www.socialthinking.com may also reveal some more recent books and materials. I'd give a look there. I hope this has been helpful. All i can do is recommend you find a clinician, therapist, counsellor or registered psychologist, who has expertise in this field. And that would mean working for several years with all age groups, children, adolescents and dults, in order to understand the complexity of this developmental disorder. The good news is that overall research has shown we are highly successful at helping higher functioning children, adolescents and adults than we could have hoped. 'Good luck in your reading!

ADHD and Autism

"I heard that you can't have autism, or Asperger's, and ADHD at the same time, is that true?" I hear this a lot. Parents go to their MD and their child, whom might have mild or high functioning autism or Asperger's Disorder is also diagnosed with ADHD. But someone "in the know" has told them this can't be true! They then worry that their medical doctor or psychologist is confused, or doesn't know what he or she is doing! Here is the simple answer: The DSM (Diagnostic and Statistical Manual of the American Psychiatric Association) does say that ASD (autism) rules out ADHD. But honestly, we don't always follow every rule stated in the DSM IV. Some of these rules, years after publication, don't make the same sense they once did. That's why there is a new version of the DSM coming out in the next year or so. The rules, or diagnostic criteria, for Autism, Aspergers (which will disappear) and ADHD (Attention Deficit Hyperactivity Disorder) are all changing to meet the real world facts we have been confronted with since the last publication of the DSM. Another reason an MD may diagnose ADHD and Autism is that he or she needs to rationalize the prescription for the ADHD medication. ADHD medications are closely monitored, and giving them to individuals without a diagnosis of ADHD is simply problematic. Do children, adolescents and adults with ASD also have ADHD? I think so. Sometimes it's obvious. But at other times what looks like inattention, focus issues and hyperactivity is nothing more than the symptoms of autism spectrum disorder. One needs to look at the severity of the autism disorder and observe the situation to make a real determination. And sometimes ADHD medications are prescribed to deal with those symptoms. Still worried about this issue? Talk it over with your medical doctor or psychologist. I often recommend that patients write out their concerns and questions before they come in to see me. That way it's easier to stay on track and not leave your appointment with the same concerns and anxiety you went there with.

Sensory Therapies and Autism: Some Concerns

There are a lot of IEP's filled with interventions for which there is little if any scientific evidence of efficacy. HealthNews has an excellent report this week on some serious doubts about the use of many sensory interventions for children with autism spectrum disorder and Aspergers Disorder that calls many of them into question. Sensory therapies using brushes, swings and other play equipment are increasingly used by occupational therapists to treat children with developmental issues such as autism, but a large pediatricians organization says there isn't much evidence that such therapies actually work. And how often are children taken from the classroom to a "sensory room" for interventions such as brushing and swinging when there is so little evidence this makes sense?What is important is that before parents spend the time and money on taking children to sensory therapy, they should know that as of now many of these techniques are largely unproven. "It's OK for parents to try these types of therapies, but there is little research backing up the effectiveness of these therapies and whether or not they improve long-term outcomes for kids with developmental disabilities," said Dr. Michelle Zimmer, an assistant professor of pediatrics at Cincinnati Children's Hospital Medical Center. Zimmer is the co-author of a new American Academy of Pediatrics policy statement on what is often referred to as "sensory integration therapy." The policy statement appears online May 28 and in the June print issue of Pediatrics. According to the pediatrician group, "sensory processing disorder" should not be used as a "standalone diagnosis." No one disputes that children with conditions such as autism can have abnormalities in their responses to sensory stimuli, including sight, taste, touch and sound. For example, autistic children may have aversions to loud noises, to certain food textures or to being touched unexpectedly, Zimmer said. But that doesn't necessarily mean the problem is with their brain pathways for processing sensory information, as the term "sensory processing disorder" implies. Instead, some other issue could underlie their reactions to stimuli, such as a behavioral issue, said Dr. Susan Hyman, chair of the American Academy of Pediatrics subcommittee on autism and an associate professor of pediatrics at University of Rochester Medical Center, in Rochester, N.Y. Instead of chalking up various aversions or compulsions to sensory processing disorder, health care providers need to consider what other developmental issues may be going on with the child, such as autism, attention-deficit hyperactivity disorder (ADHD) and so on, Zimmer said. A full and comprehensive diagnosis needs to take place, along with a Functional Behavioural Analysis to determine the cause of the unwanted and harmful behaviours before employing unproven techniques, especially when they are often offered IN PLACE OF interventions that are known to work. "There has never been a study that has shown that a child can have just sensory processing disorder, isolated from another developmental disabilities, such as autism or ADHD," Zimmer said. In sensory integration therapy, occupational therapists put children on a "sensory diet," exposing them to different sights, smells, sounds and sensations, to improve the brain's ability to process the information. "For now, however, whether it works remains a theory," Dr. Zimmer said. In the absence of controlled clinical trials testing whether sensory therapies work, parents have to try to be objective, ask themselves tough questions about whether the treatment is really working, set specific goals and determine if the child is moving toward the target. "Is it improving the child's ability to function? That's where more research needs to happen," Zimmer said. Hyman, who studies sensory differences in children with autism, agreed. "The scientific testing of this intervention has not demonstrated that it is effective for all children as a standalone treatment," she said. "However, for individual children, it may be an important part of a total therapy package." "You don't want to spend a lot of time money and energy on a treatment if it's not right for them. They have to be prudent," Hyman said. "In the absence of data, parents have to utilize the information that's available to them in making choices." One serious problem is that children are removed from classrooms in order to effect this "sensory diet." Limited time, staff and funding is used to implement these unproven treatments, and there is little left to implement treatments that are known to work. It is far easier to get an aide to take a child to a sensory room to swing, or to brush them on the arm during class, that to get a staff member adequately trained in behavioural interventions. Often staff training and availability leads to certain interventions. When a child with moderate to severe behavioural issues is receiving a sensory diet, brushing, "social stories" and "walks" throughout the day rather than having a professionally trained behavioural specialist complete an FBA (Functional Behavioural Assessment) and implement a behavioural program, parents should wonder if this is due to an assessment based on science, or staffing availability and limitations. OTs (Occupational Therapists) and PTs (Physical Therapists) are highly trained and critically important members of any school intervention team. They can offer critical help and insight into working with children with autism spectrum disorder, ADHD and other similar conditions. But today there is an over emphasis on simple, easy and unproven interventions because schools simply don't have enough professionals trained to implement the most basic behavioural interventions ranging from token systems (positive behavioural reinforcement systems) to desensitization programs. These well tried, scientifically proven and studied techniques require trained staff members, something we seem to have fewer and fewer of with all the funding cuts our educational system has undergone. KEY WORDS: ADHD, ADD, Attention Deficit Hyperactivity Disorder, Coaching, Diagnosis, Burnaby, Vancouver, Coquitlam, New Westminister, Psychologist, ADHD Coaching For more information visit: http://www.relatedminds.com/adhd-attention-deficit-hyperactivity-disorder http://www.relatedminds.com http://www.counsellingbc.com/listings/JRoche.htm

Autism Rate is Irate!

http://www.nytimes.com/2012/04/08/sunday-review/the-autism-wars.html

Tomorrow's *New York Times* (Sunday, April 8) has an article in its Sunday Review section: "The Autism Wars" by Amy Harmon.

Here are some excerpts:

[begin excerpts]

THE report by the Centers for Disease Control and Prevention that one in 88 American children have an autism spectrum disorder has stoked a debate about why the condition's prevalence continues to rise.

The C.D.C. said it was possible that the increase could be entirely attributed to better detection by teachers and doctors, while holding out the possibility of unknown environmental factors.

But the report, released last month, also appears to be serving as a lightning rod for those who question the legitimacy of a diagnosis whose estimated prevalence has nearly doubled since 2007.

As one person commenting on The New York Times's online article about it put it, parents "want an 'out' for why little Johnny is a little hard to control."

Or, as another skeptic posted on a different Web site, "Just like how all of a sudden everyone had A.D.H.D. in the '90s, now everyone has autism."

The diagnosis criteria for autism spectrum disorders were broadened in the 1990s to encompass not just the most severely affected children, who might be intellectually disabled, nonverbal or prone to self-injury, but those with widely varying symptoms and intellectual abilities who shared a fundamental difficulty with social interaction.

As a result, the makeup of the autism population has shifted: only about a third of those identified by the C.D.C. as autistic last month had an intellectual disability, compared with about half a decade ago.

Thomas Frazier, director of research at the Cleveland Clinic Center for Autism, has argued for diagnostic criteria that would continue to include individuals whose impairments might be considered milder.

"Our world is such a social world," he said. "I don't care if you have a 150 I.Q., if you have a social problem, that's a real problem. You're going to have problems getting along with your boss, with your spouse, with friends."



Some parents bristle at the notion that their child's autism diagnosis is a reflection of the culture's tendency to pathologize natural variations in human behavior.

Difficulty in reading facial expressions, or knowing when to stop talking, or how to regulate emotions or adapt to changes in routine, while less visible than more classic autism symptoms, can nonetheless be profoundly impairing, they argue.

Children with what is sometimes called "high functioning" autism or Asperger syndrome, for instance, are more likely to be bullied than those who are more visibly affected, a recent study found -- precisely because they almost, but don't quite, fit in.



According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite.

Twenty percent of the 8-year-olds the agency's reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis.

The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis.

In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate -- 1 percent -- in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.

Those numbers are, of course, dependent on the definition of autism -- and the view of a diagnosis as desirable.

For John Elder Robison, whose memoir "Look Me in the Eye" describes his diagnosis in middle age, the realization that his social awkwardness was related to his brain wiring rather than a character flaw proved liberating.

"There's a whole generation of people who grew up lonelier and more isolated and less able to function than they might have been if we had taken steps to integrate them into society," he said.

Yet even some parents who find the construct of autism useful in understanding and helping children others might call quirky say that in an ideal world, autism as a mental health diagnosis would not be necessary.

"The term has become so diffuse in the public mind that people start to see it as a fad," said Emily Willingham, who is a co-editor of "The Thinking Person's Guide to Autism."

"If we could identify individual needs based on specific gaps, instead of considering autism itself as a disorder, that would be preferable.  We all have our gaps that need work."

[end excerpts]

IEP's and Autism Spectrum Disorder

I've just returned from my third IEP meeting this week. These IEP meetingss were for children, all in grades 4-8, with Autism Spectrum Disorder, all high functioning, two were students who would be better diagnosed with Asperger's Disorder.

Oddly none of these IEP's mentioned an intervention for social cognitive deficits! None! There were concerns for behavioural issues (that's usually how I get asked to a meeting, because I specialize in behavioural disorders), academic problems and anxiety, two IEP's mentioned anxiety.

An IEP needs to FOCUS on the disorder which lead the child to be classified or designated ("coded" in BC schools) and bringing about the IEP.  At the team meeting I discovered the reason for this lack of focus on the student's social cognitive deficits: No properly trained staff to implement an intervention. Sad, but true!

Academic goals were the most common issues addressed in the IEP. Parents of course want their children to do well academically so they often go along with an IEP that addresses one academic goal after another. Who doesn't want their child to do well in reading or math? But the child is receiving support services for a deficit of social cognition - not an academic deficit. Why don't these IEP's address this issue?

Almost always there was this, "Tommy will learn to ....." Fill in the blank. Seldom did the IEP mention how he would "learn to...."  And seldom did it mention any issue in relationship to the psychoeducational assessment the student should have had prior to the IEP? (I can't tell you how often I go to schools in BC and find no real psychoeducational assessment for a child that is "coded." This is NOT suppose to happen,  but it does. )

The psychoeducational assessment should be on the table, literally on the table, at every team meeting. It contains valuable information on the student's strengths and weaknesses that can help us determine which interventions will be successful, and which will not be. Often the "list of strengths and weaknesses" is nothing more than a list of comments taken at the beginning of the meeting. Don't waste this valuable information! And every parent should review the psychoeducational assessment with the school psychologist to see how the real data (as compared to opinions) relates to the IEP.

If your child has autism spectrum disorder, Asperger's Syndrome or another related problem with social cues and communication his or her IEP needs to address that. The IEP needs to say what the deficit is, how it will be supported, what tools and techniques will be use, who will implement them, how often for how long (so important!) and how we will measure the outcome. How will we know things are getting better. It's as simple as that.

Here is a simple IEP outline I like:
http://trainland.tripod.com/sample.htm

Ontario's IEP can be found here:
http://www.ontariodirectors.ca/IEP-PEI/IEP-PEI_Eng_Downloads/autism%20-%20sec.pdf

What's important is to ask yourself, "Are the areas that had deficiencies during the assessment for my child's diagnosis addressed in the IEP?" (This means the original assessment for the autism diagnosis done at the hospital or by a private clinician - you were asked to supply this in order to get services, and the psychoeducational assessment that was either part of that or came later.)

This means sensory issues, social cognition/social reciprocity (NOT social skills!), communications, behaviour, motor issues. These must be covered!

Recently I spoke with a parent who told me that she didn't get a copy of her son's IEP, but the school would send it if she wanted it... I was rather surprised to say the least. I asked what services her son was getting. Remember, he has autism, has an IEP, his school gets specific funding to provide support. Her answer was: "They are keeping an eye of him." Regretfully I've heard this too many times. Keeping an eye on things means we will wait for failure, then act. That's not a plan.

A key issue to remember is this: Your child, no matter how high or low functioning he or she is, needs to develop a set of skills they can use to approach life with. These skills are best taught when things are going well. Not during a crisis. This is why I tell parents and teachers not to avoid the use of basic tools like visual supports - so often abandoned because "my child is more advanced..." Visual supports, anti-anxiety skills, relaxation skills.

An IEP is an important document. It's a contract between you and the school. Make sure it tells you enough to know what to expect as outcomes for this year ....and upon graduation. Take the IEP process serious. Look up sample IEP's on the web. Talk to other parents. See a psychologist and ask him or her to look over the IEP before you sign it. Bring someone to the IEP with you. Go to every meeting.

Autism Rate continue to Climb and Climb and Climb

The likelihood of a child’s being given a diagnosis of autism (ASD), Asperger's Syndrome or a related disorder seems to have increased more than 20 percent from 2006 to 2008. The New York Times and other major papers have proclaimed a definite rise.

Click here to view the article from the NYT
http://www.nytimes.com/2012/03/30/health/rate-of-autism-diagnoses-has-climbed-study-finds.html

Reading the New York Times we see there is a new report from the US Center for Disease Control (CDC) which estimates that in 2008 one child in 88 received one of these diagnoses (by the age of 8), known as autism spectrum disorders or ASD, compared with about one in 110 diagnosed with ASD two years earlier. Does this indicate that we are seeing an epidemic of autism, as some have speculated, or is the issue one of changes in the way we diagnose autism, or that we (doctor, teachers, parents) now pay more attention to the symptoms and therefore notice and then diagnose more children? At this point, it's not clear.

As some have suggested, one possibility is that we are seeing the result of better detection rather than a real surge in autism. However, there are some striking parts of this new CDC study that again makes us wonder if there isn't really an increase in the number of cases.

One report notes, "The rate of autism increased by more than 45% from 2002 to 2008 in numerous sites. It was a larger and more consistent increase than from 2002 to 2006. The increase was also very uneven in terms of geography, gender, race and ethnicity. Some sites had nearly five times as many children with autism as others. In several sites, almost 1 in 33 8-year-old boys were diagnosed with autism. This seems difficult to believe, particularly when these sites had smaller samples and children with less severe intellectual disabilities. One wonders if some sites became part of the study because of a long-term commitment to autism services, and this had drawn certain families to live nearby, resulting in an increase in the frequency of diagnoses made by local medical centers or educational programs." In other words, people may move closer to some centres that study autism and therefore the local rates are, indeed, higher.

Also, since the children didn't just meet the CDC study criteria for autistic characteristics -- 80% of them had autistic diagnosis from community physicians -- it may be that there is truly a higher rate of autism. Granted, the children were not actually seen by CDC researchers, so it's possible that the methods of diagnosis varied among the sites. All of these variations make it difficult to really understand this data. Apples and oranges.

So, what are the implications of this new study?
The CDC researchers are aware that it's critical to identify the sources of variability in their data. For example, why were nearly twice as many children diagnosed with autism in Utah than in Colorado or Arizona? If the rates are really increasing, does it mean that many more children, particularly those from ethnic or racial minorities who are often missed, could have autism and we just don't know yet? If we do a better job of identifying children with autism, the rate will certainly continue to increase. How do we address this issue, which is not unique to autism?

Thomas Insel, director of the National Institute of Mental Health, commented that the most useful approach right now is to assume that there is an increase in autism and try to figure out why this is happening. He says, "Regardless of all the unanswered questions, we should keep in mind that autism is a common condition. More children need autism services than ever before. We need cost-effective ways to identify the disorder at early ages, provide adequate support and work with affected families to help their children transition to adulthood."

"For families concerned that their child might have autism, it's important to be persistent in seeking help. The study suggests that children with autism in some parts of the country are much more likely to be recognized than in other parts, so seek the best resources possible and do not give up until you are sure. It may be that your child does not have autism since the disorder overlaps with various other common conditions such as delayed language ability and attention deficit disorder. Far more children don't have autism than do."

So, lets sum this up:
That is apparently a relative increase of 23% from a previous analysis of data from the same network of clinics and doctors for 2006, when the estimated prevalence was one out of 111 children, and a 73% relative increase from 2002, according to a surveillance summary in Morbidity and Mortality Weekly Report.

Understanding this is tricky because of a lack of objective diagnostic markers and changes in clinical definitions over time, so it's unknown how much of the increase is real and how much is related to changing diagnostic criteria and better identification of cases. But here is the important point: If these children really meet the diagnostic criteria for autism spectrum disorder, new, previously missed, finally noticed doesn't matter as much as: Are we funding research properly? At a rate that is commiserate with the seriousness of this disorder? Have we wasted enough money, time, research effort on false theories like autism and vaccines already? Is it time to start a "war on autism" like the war on cancer? Time to devote a lot more money to both treatment and research into prevention? Those questions can be answered, and the answer is yes.