Maureen's Blog

A story that’s grabbing headlines this month is the Telford’s struggles with their adult son who has severe autism. Amanda Telford left her son at the Ottawa offices of Developmental…

April is Autism Awareness month. April 2nd marks World Autism Day, which was created by the United Nations in 2008. Autism Speaks celebrates this day with their Light It Up…

It has long been thought that music therapy has a positive effect on children with autism. Pertanika Journal highlighted a study where improvements were seen, particularly in inattentive behaviours over a ten month period, in 41 children with autism. Music and movement therapy has been used to address physical, emotional, cognitive, and social needs of individuals of all ages. The researchers hope that their research will help children and young adults with autism to modify behaviour. To read the article, click here.

The beginning of the 2013 has been peppered with new research studies. Chuck Hensel, an author on the new research study which has identified 24 new gene variants associated with autism spectrum disorders (ASD), was published in PLoS ONE. Hensel is the senior manager of research at the genetic diagnostics company Lineagen. This research confirms that 31 variants previously linked to ASD may serve as useful genetic markers for identifying those with the condition.

Hensel worked with researchers from University of Utah and the Children’s Hospital of Philadephia and created a two-pronged approach for hunting down genetic markers of autism. “First, the researchers chose 55 people living with autism, all from families with many members diagnosed with ASDs. The scientists then sequenced the genomes of these subjects, and compared the genetic profiles to those from a reference population, using the Utah Genetics Reference Project. That allowed them to find regions where the autistic individuals differed from people without the disorder, and led to 153 gene variants, or genetic red flags for the condition.”

The big news this past month was the finalizing of the DSM-V which will be published May 2013. There was much discussion around the possibility of Asperger Syndrome no longer being classified as a separate diagnosis. Asperger Syndrome will now be a part of Autism Spectrum Disorder (ASD), a new term added to the manual. ASD is a term already used by many experts in the field. The new category will include individuals with severe autism, who often don’t talk or interact, as well as those with milder forms. Catherine Lord, an autism expert at Weill Cornell Medical College in New York who was on the psychiatric group’s autism task force, said anyone who met criteria for Asperger’s in the old manual would be included in the new diagnosis.

The changes to the manual are important for the insurance industry in deciding what treatment to pay for, and for schools to decide how and what to fund for special education. Experts have weighed in on the new changes to the DSM-V. The changes to the DSM-V will continue to be a hot topic once published because assessments and the diagnostic process may change according to the new ASD classification.

The Christmas holidays are a time of great excitement and anticipation. Holidays also mean changes in the schedule, visitors, crowds, line-ups, noise, and socializing. For children with ASD, the Christmas holidays can be a stressful and anxious time. Meeting family demands can be especially nerve-wracking, particularly if you want to break with time-honoured traditions that just don’t work for a child with autism. Here are a few ideas for making the holidays happy.

Principal investigator Johanna Montgomery, from Auckland University’s Centre for Brain Research in New Zealand, has discovered a genetic mutation in people with autism that cuts communication between brain cells to about one-tenth of normal levels. The study found that a protein which helps brain cells transfer data through neurological pathways called synapses was mutated in autism sufferers. This could be a reason for their cognitive and behavioural difficulties. Published in the October Edition of Journal of Neuroscience, Johanna Montgomery said the mutated protein called Shank3 provided exciting possibilities in the search for autism treatments. Even with this new discovery, treatment is still years away.

Temple Grandin, the most famous person in the world with autism, recently had a brain scan done. She has exceptional nonverbal intelligence and spatial memory. Temple’s brain had a host of structural and functional differences compared with the brains of the control group in this comparison study.

Temple was 63 at the time of the brain scan. Her brain volume was found to be significantly larger than that of three neurotypical controls matched on age, sex and handedness. Some children with autism have abnormally large brains, though researchers are still working out how head and brain size changes across development. It was interesting to find that many of Temple’s strengths like memory and visual perception correlate with her brain differences.

I attended a presentation last week on practical approaches to teaching sexuality and want to share what I’ve learned. Teaching sexuality is often a daunting task whether you are a parent or professional. When it comes to ASDs, there is a two-fold problem: physical development is often typical while cognitive and social-emotional development are delayed and some sexual behaviours may be rooted in other causes such as sensory issues, rigid patterns of behavior, or the enjoyment of negative attention. You have to be a detective and investigate the reasons why sexual behavior is being exhibited; the cause may not be what it appears to be. For example, excessive touching of the genitals may be because pants are fitting too tightly and the touching may not be pleasure seeking related at all.

Analyze behavior and plan interventions to reduce inappropriate behavior. Ask the question, “What are they trying to get out of this?” You can teach and model something more appropriate, offering suggestions on what you can do instead.

Confused about interventions for autism, what options are out there, and how effective they are? Autism Research reviews a different treatment, therapy or intervention each month. September’s review was on Cognitive Behavioural Therapy. The review is offered in a basic, intermediate and advanced version. They are also open to suggestions for what to review in the upcoming months. The latest autism research is also posted on this site.

Issues around schooling have been at the forefront for parents with the start of new school year. Time featured a great article on why kids with autism are a target for school bullies. A new study revealed that 46% of autistic children in middle and high school told their parents they were victimized at school within the previous year, compared with just over 10% of children in the general population. What makes them easy targets is they have trouble recognizing social cues, which makes them awkward around others. They also often engage in repetitive behaviors and tend to be hypersensitive to environmental stimuli, all of which makes children with the disorder ripe targets for bullies who zero in on differences and enjoy aggravating their victims.

One of the greatest fears a parent of a child with autism has is how and where will their child live when they are no longer able to take care of them. What will their adult lives look like? How will they spend their day? What does a meaningful life look like in adulthood?

I attended an excellent presentation this week given by Neil Walker of Kerry’s Place Autism Serivces (KPAS) located in Southern Ontario. Neil described the KPAS philosophy which I’d like to share with you because it has been a big part of the KPAS success story and positive outcomes for those with ASD. Their values could be adapted to any new organization wanting to provide services for adults or be the guiding principals of what parents should be looking for in order to ensure a high quality of life in adulthood.

The start of a new school year is on most people’s minds these days. Everyone wants to start the year off right. Teachers may find the School Community Toolkit a helpful resource to learn more about autism, inclusion, educating classmates, the rights of students with autism, instructional methods in teaching students, assistive technologies, therapies used, and ideas for a team approach. There is also an All About Me form for parents and caregivers to use about introducing their child to school staff. Another great All About Me form to be used for school or community activities can be found here.

There was a great UK blog post this past month from Carole Rutherford on classroom sensory scripts. This covers physical aspects of the classroom, a new teacher, unfamiliar fixtures and fittings in the new classroom, and much more. “Going into a new classroom with a new teacher can be difficult for every child. But when you add all of the sensory scripting that a child with autism has to add to the things they are expected to learn each day, it is not surprising that many of our children suffer from anxiety and stress on a daily basis, day in and day out.”

When at a restaurant this week, I went to use the bathroom. Luckily, I speak French and knew the difference between femmes and garçons so could navigate which bathroom to use. Had my two children with autism been confronted with that on the doors, they wouldn’t have known which door to choose. It got me thinking…how to do we teach the symbols for toilet, which one to use if you’re male or female, and general washroom etiquette?

After doing some searching, I did find a good page filled with different symbols for the washrooms. While this doesn’t cover all of it because there is a vast, creative, array of toilet symbols, it’s at least a  starting point to let a person with ASD know there is a variety of toilet signs and they can change from place to place. Restaurants tend to be the most creative with their bathroom signs, so when at a new restaurant, it would be a good idea to accompany the person with ASD even if they are independent with toileting. There will also be symbol differences between countries and languages. If planning a trip to another country, you may want to review the toilet symbols before you go to create some predictablility and lessen anxiety.

September is here which means the start of a new school year. Great expectations and high hopes abound. Maybe your child is going to a new school this year or attending school for the first time. Parents and children can feel both excited and anxious. How can you make this year a successful one? What is both reasonable and attainable this school year?

At Home

• To make mornings a little less stressful, lay clothes out the night before, make lunches and check agendas for communication, forms etc.
• If your child has trouble waking up, set the alarm 15 minutes earlier than needed to allow time to rise.
• Post a visual schedule or checklist where your child can see it to know what needs to be done before leaving in the morning – bathroom routines, packing a backpack, dressing etc.
• Be cautious about overscheduling with extra-curricular activities. For many children with ASD, it takes great energy to cope with the school day and down time can be needed after school. Look at alternative ideas such as one day events or weekend activities for things to do.
• Decide if your child will do homework or not. If you decide to do homework, assign a quiet spot where it can be done and a regular time in the schedule.
• Create some visual organizers for items that have to go back and forth to school. This could be a basket or bin by the front door.
  
  

Kids Cooperate out of Connecticut, US has developed a new way of using innovative technology to build social skills for teens with ASD. e-Hangouts brings teens together in safe, facilitated friendship circles to socialize and support each other. Using Google’s secure video conferencing technology, groups of 9 peers and a facilitator meet for 30 minute sessions to check in, play games, and hangout in a way that builds confidence, develops social skills, and scaffolds the development of real friendship.

Groups are available to teenagers ages 13-15, 16-18, and 18 and over. Members are placed according to their developmental needs and interests. e-Hangouts are best suited to those with high functioning autism, Asperger Syndrome, ADHD or are shy. Teens learn how to sustain relationships, build resiliency, read social cues and much more!