By Maureen Bennie
Member,
Autism Calgary Community
Director,
Autism Awareness Centre Inc.
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We’ve been back at school for a month now. One area that causes difficulty for those with ASD is getting and staying organized. The website Understood posted a great article on how to use colour coding to keep children organized. Their 8 tips are useful for both home and school. Colour coding is another way to provide visual support and help systematize activities. This, in turn, lessens anxiety.
A recent study has found that the speech disorder apraxia can affect up to 64% of children with autism. Children with apraxia will have difficulty coordinating the use of their tongue, lips, mouth and jaw to accurately produce speech sounds, so that each time they say the same word, it comes out differently. Parents often have difficulty understanding them.
The study involved researchers looking at a group of 30 kids ages 15 months to 5 years who were referred for evaluations due to concerns about speech, language or autism. “Of the children initially diagnosed with autism, nearly 2 out of 3 also had apraxia, the study found. Meanwhile, among those first flagged with apraxia, 36.8 percent were also found to have autism.”
If you suspect your child has apraxia, consult a speech pathologist for an assessment. There is a method called PROMPT that is used to treat apraxia, but the speech pathologist has to have training in this method in order to use it.
There has been a lot of press recently about differences in girls with ASD not being researched. At the Yale Child Study Center, Pamela Ventola is looking at the difference in autism treatment between boys and girls. Ventola is looking for 24 families who have diagnosed girls ages 6 – 9 to participate in a 3 year study.
“During four months of study and play-based therapy with each girl, Ventola’s team hopes to gain a deeper understanding of the sex-based differences between boys and girls with autism, how girls respond to treatment, and how the girls perceive and react to social signals.” The team will also look at possible genetic differences and whether supplements of the oxytocin hormone, which is associated with social bonding and feelings of attachment, might be effective in children with autism.
Girls may require different treatments than boys in order to improve. Without research, we will continue use the same methods for both sexes which may not be the best course of action. To read more about issues that affect girls/women on the spectrum, have a look at these resources.
New research suggests that many people with intellectual disabilities are overprescribed medications, even with little evidence that they may benefit from these medications. Drugs are often used to treat problem behaviors such as aggression and self-injury.
This trend is alarming because 71 percent of those with intellectual disabilities who were prescribed antipsychotics had no record of severe mental illness, which is what the drugs are designed to treat.
“Research evidence does not support using antipsychotics to manage behavior problems in people with intellectual disabilities,” said Rory Sheehan of University College London, who led the study. “Many people with intellectual disability and behavior disturbance have complex needs and other interventions, such as looking at the support people receive and their communication needs, should be prioritized. Antipsychotics, or indeed any medications, should not be prescribed lightly and are no substitute for comprehensive care.”
Researchers did note that there has been a decline over the past 15 years of the use of antipsychotic drugs in those with an intellectual disability. The study also found that “medications for anxiety and depression were also frequently prescribed to people with intellectual disabilities.”
Psychologists at Cardiff University have developed the first self-assessment test for repetitive behaviours in autism designed to help clinicians diagnose autism in adults. These behaviors include common habits and routines, such as lining up objects or arranging them in patterns, fiddling obsessively with objects, or insisting that aspects of a daily routine remain exactly the same.
Note that “the test on its own cannot diagnose autism because repetitive behaviours are common to other conditions (like OCD) and because repetitive behaviours are only one criterion for a diagnosis of autism. The test has been designed to help clinicians in the diagnostic process.”
Danny Raede and Hayden Mears, young adults with Asperger Syndrome, have started a website called Asperger Experts. They have posted videos of themselves providing first-hand accounts on issues around Asperger Syndrome. Check out their clip on how to motivate someone with Asperger Syndrome. Yes – sensory issues are often the root cause of fear which can appear as a lack of motivation.
I am an avid reader of Judy Endow’s blog because she highlights issues that many of us are not even aware of. Her recent post about the differences in self-advocacy if you are poor or middle income was eye-opening. Judy has been both poor and middle income as an autistic adult and has observed that “self-advocacy is typically geared toward middle-income status. This could be problematic since many autistic adults live in poverty.” She talked about two dental experiences she has had – one as a poor person, and one as a middle income person. Even though she used the same set of self-advocacy skills in both situations, each had a different outcome.
Food for thought from Judy, “We live in an era where transition programming for teens and young adults with autism is very much needed. As these programs are developing we need to be mindful of the potential impact of teaching middle class skills to individuals who may live in poverty during their adult life.” I think Judy is absolutely right about this – we will need to adjust our teaching.
Having difficulty transitioning your child into a fall coat? Check out Autism Awareness Centre’s 5 Tips on Getting Your Child with Autism Into Their Fall Coat. Temperature regulation can be a real issue for those with autism and this can cause resistance over changing from summer to fall gear. Be aware of this issue as the seasons change in order to keep your child comfortable.
It is often a challenge to get funding and support organizations to understand the cost to families of raising a child with special needs. Even though Canada has a publicly funded health care system, many essential services are not covered such a speech, occupational therapy, or psychological assessments and support. Many families are placed on lengthy waiting lists and miss years of intervention.
In 2009, two economists from Dalhousie University in Halifax authored a paper using data from the 2001 Statistics Canada Participation and Activity Limitation Survey. “They found that 62 percent of parents of kids with a disability reported having out-of-pocket expenditures related to the child’s condition, and five percent of families requiring services such as physiotherapy and speech therapy not covered by a provincial health plan spent more than $5,000 per year on those expenses alone.”
Funding bodies need to understand the impact on families of having a child with a disability. It limits work hours, often reduces families to one income, and many needed services are not covered by health care. Read this informative article from Today’s Parent that outlines the cost of raising children with disabilities. It may help strengthen a parent’s case for more funding.
Uniquely Human: A Different Way of Seeing Autism by Barry Prizant is a much talked about new book. In this book, Dr. Prizant suggests a major shift in understanding autism: Instead of classifying “autistic” behaviors as signs of pathology, he sees them as part of a range of strategies to cope with a world that feels chaotic and overwhelming. Rather than curb these behaviors, it’s better to enhance abilities, build on strengths, and offer supports that will naturally lead to more desirable behavior and a better quality of life. In fact, argues Dr. Prizant, attempts to eliminate “autistic” behaviors may actually interfere with important developmental processes.
While it never discounts the difficulties of living with autism, Uniquely Human offers inspiring stories, and practical advice drawn from Dr. Prizant’s four-decade career working in universities, schools, hospitals, and in private practice. It conveys a deep respect for people with autism and the qualities that make them special. Filled with humanity and wisdom, Uniquely Human offers a compassionate and insightful perspective that parents, professionals, and family members will find uplifting and hopeful.
Just in time for the start of high school, Asperger’s Teens: Understanding High School for Students on the Autism Spectrum will help teens find some ways to help themselves feel more comfortable and more relaxed in high school — and better able to make friends, understand teachers, and get the grades they are capable of. There are lots of quizzes, exercises and examples to help with a number of areas such as dealing with bullying, using social media safely, developing healthy habits, and working well with teachers.
These are the highlights of what in the world is going on in autism for October 2015.