Dr. Magda Mostafa, Assistant Professor at the Department of Architectural Engineering at the American University in Cairo who also serves as Deputy Vice-President for Africa in the UNESCO-International Union of Architects’ Education Commission and Validation Council, was asked back in 2002 to design Egypt’s first educational facility for autism. She was surprised to find no guidelines for such a project existed anywhere. Dr. Magda decided to do her own research in order to create designs with the sensory and social needs of people with autism in mind.
Video: Maureen Bennie part 1
Maureen Bennie, mother of two teenagers with autism, talks about how a program at Calgary’s The Ability Hub is teaching her children the daily-living skills that prepare them for independent living in adulthood.
(video re-directs to the Ottawa Citizen website)
Answer: There are a number of frequently asked questions around when you should tell a child about their ASD diagnosis. How do you tell a child about their diagnosis of ASD? Is there a right age? How do you know when the child is ready to hear the information?
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.
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.
Answer: It would be a challenge to find a school anywhere that does not have a student in it with an autism spectrum disorder (ASD). Most teachers will have a student with ASD in their classroom at some point in their career. Because the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe, a teacher may not recognize new students in their classroom with an ASD from year to year.
There are many reasons for continued programming for children with autism spectrum disorder. Firstly, ASD’s are lifelong and on going with no present cure. We know that early intervention programming has made significant gains for our children and helped them with behavior, communication, social interactions, and sensory issues; however no human being is a stagnant entity.
Children with ASD’s grow, develop, and change, as does a neurotypical child. The problems present at age 5 are not the same problems at age 7 or 12. Yes, they are rooted in the same causes such as the inability to read the hidden social curriculum, anxiety, on-going sensory problems, and restricted behavior patterns, but new strategies need to be developed on a continual basis to meet the new challenges.
Answer: Perhaps you fit one of these parenting scenarios. You suspect your child has a language delay and are on a six-month waiting list for an assessment. In the meantime, you want to take affirmative action to help your child. Or maybe your child has been diagnosed with a language delay, is receiving therapy, but you want to provide additional parental support at home. There are several strategies a parent can use at home to assist in language development: following the child’s lead, balance turn taking, match what your child is doing, wait for communication, and listen to communication attempts.
I had an eye-opening experience this week with my social worker about my children’s services. I’ve almost run out of funding on my current contract that will expire next month. Part of the reason for this is because I have not been accessing all of the correct programs. When I said I didn’t know about a certain program, I was told it is my job as a parent to know what the programs are available and what I should be accessing. It’s on a website, which is transparent, and I should be able to figure out all of the information from there. I was dumbfounded because how do you ask a question and search for information when you don’t even know the right question to ask?
I had a similar experience when my son was younger and was still in diapers until the age of 9. A parent told me in passing that I was eligible for funding for diapers because my son was over the age of 3. Why had no one on my professional team ever told me about this program? Same thing with the disability tax credit – another thing I stumbled upon on my own quite by accident.
It boils down to this – caveat emptor or buyer beware. You have to think of yourself as a consumer even where autism supports and services are concerned, read the find print, and do some investigating to find out what you qualify for. So where do you start and who is in the know?
Answer: Receiving an autism spectrum diagnosis is a life-changing event. Now that you know, the next question becomes who should you tell? What do you base this decision on? It can be difficult to know how much information to give because you don’t want to overwhelm people yet you need to give enough information to educate and inform. There will be some trial and error in disclosing because there’s no way to predict another person’s reaction; some reactions will be positive and others will be negative. Negativity often stems from fear so an initial negative reaction can turn positive once a person is more comfortable with autism and what it’s all about.
This month, Autism Awareness Centre Inc. (AACI) celebrates 9 years of service in the autism community. Our journey has been a remarkable one. When we first started the company, we had 90 books in our bookstore. Now, we have over 500 and continue to expand the collection monthly. I spend a great deal of time researching new books, reviewing them, writing book reviews for publishers, and help authors bring their new works to an enthusiastic readership. We added a French books section 7 years ago. We were one of the first bookstores to develop a Girls Only section, finding information pertinent to girls – a gender not often discussed in the field of autism. I’ve seen tremendous growth in the autism book industry over the past 9 years and have tried my best to pass on new information to all those who visit AACI. Our monthly book blasts keeps our readership on the cutting edge of new publications.
We’ve travelled throughout Canada with our bookstore supporting other autism and related disability events. AACI has represented speaker/authors, organized book signings, donated books for door prizes, and been on-site to answer questions about resources, websites and much more! It’s been a great source of pride for us to support and enhance community events. Thank you to all those organizations who have made us feel so welcome and a part of things.
Our website has expanded considerably over the years. I started blogging 3 years ago and have written about many autism topics. Although the concept was to be a weekly blog, constant travel and family demands have caused me to miss a week of posting here and there. Thank you for your patience with the blog! We’ve added a monthly Q & A which addresses your most pressing and frequently asked questions. The Help/ Resources links section continues to expand monthly. Last month, a Technology section was added to address this growing field. The website will continue to evolve and grow to meet the changing needs of the autism community.
iPads, iPhones and other tech devices are gaining popularity for assisting people on the autism spectrum. There are lots of positives going for technology: people on the spectrum often enjoy using technology, there is some autonomy, it takes the pencil out of the process to demonstrate learning, there are 1000’s of apps to teach a myriad of skills, and their use can be both motivating and rewarding. Nonverbal individuals have another way to express themselves. These tech devices are also becoming more affordable all the time. But is there a down side?
Daniel Donahoo wrote an interesting blog about the iPad and autism for Wired magazine last March that brought up some important points. He stated in his blog, “the potential of the iPad is not achieved by the iPad alone, nor by simply placing it in the hands of a child with autism. The potential of the device is realized by the way professionals like speech pathologists, educators, occupational therapists and early childhood development professionals apply their skills and knowledge to use the iPad to effectively support the development of children. The potential is realized by engaged parents working with those professionals to explore how the device best meets the individual needs of their child.”
How and when do you tell a child about their diagnosis of ASD? Is there a right age? How do you know when the child is ready to hear the information? These are frequently asked questions around helping a child understand they have ASD.
It is recommended not to start this process before the age of 7. Children under that age generally don’t have enough understanding to grasp what autism is all about. When parents feel anxious about wanting to talk to their young child about autism, I usually suggest they begin with celebrating differences and building positive self-esteem. A couple of good children’s books to start with are It’s Okay to Be Different or Special People, Special Ways. Let them know that each of us is unique, deserving of respect, and we should appreciate different ways of seeing the world.
This week I attended an excellent seminar about how to best serve immigrants who have a child with a disability. One of the guest lecturers began the presentation in Spanish; her Power Point slides were also in Spanish. Although I could understand the overall meaning of what she was saying and had visual support with the slides (I have a good background in French), I found myself having to concentrate twice as hard as I normally do. I was worried that I was missing important details of what was being said, even though I understood the information generally. What a great way to open this topic by putting us in the shoes of a person who doesn’t speak the language fluently.
Answer: Finding the right person to provide respite or in-home care can be a daunting task. The person needs to be a good fit with both the child and the family. How do you find the best person? What qualities to you look for?