Recently I have had many discussions around the topic of Autism. People are curious and want to know more. When I am approached about the work I do I have to be specific. I explain that we cannot merely meet the needs of everyone on the spectrum by putting them in a box. I spend a lot of time explaining that autism is a spectrum disorder therefore the needs of every individual is different.
In literature we often find terms such as low-functioning, hi-functioning and Asperger’s Syndrome being used to classify people on the spectrum. These terms are usually used for teachers and therapists to understand who they are working with. There is a debate around whether or not we should be using these terms.
Over the years I have filtered many calls of parents desperate for answers. Some saying my son is a “little autistic”. They say that because they mean their child can function in regular settings but may have some limitations. Other parents use the term severely-autistic to paint the portrait of someone who is not and will not be autonomous.
Over the years we have heard the word autism being used so much that some question whether or not this is merely a label liberally being slapped on children. Some people treat it as we did years ago with ADD or ADHD. When people talked about those conditions it was immediately associated to the overuse of Ritalin. This bred fear in parents who automatically thought my kid will be labelled and recommended to take Ritalin as a cure all. Autism is on the rise and we have to start having the hard conversations. Merely knowing certain characteristics of a person with autism in no longer enough.
It relates somewhat to my family’s story. Often times when someone asks about my son and how he functions in the world I have to explain by using the term low-functioning. Then I proceed to paint the portrait of someone who is non-verbal, who needs support with day-to-day tasks (help to wash his hair, shave his face or brush his teeth) in essence someone who is not autonomous. If the conversation continues then I explain what Keyan’s future looks like and that means living with us as long as we can care for him, stating the facts that he will never have a formal education, will never marry or have the ability to be fully autonomous.
I don’t mind sharing what Keyan’s autism looks like but I don’t want people to assume that that’s what having autism means. I then proceed to talk about those who are hi-functioning on the autism spectrum which means often times these individuals can function quite well in regular settings – albeit they have their challenges. I want people to understand that a person who is considered hi-functioning is more complex. Some people manage to create a life for themselves having learned how to adapt. There are an endless number of people on the autism spectrum who graduate from school, play organized sports, marry and have children. There is also a percentage of those who struggle to adapt and although they can care for themselves the world remains a scary place for them and hence their world restricted.
There is also what I like to think as the prize catergory of people who have Asperger’s Syndrome. These individuals are considered to be the “intelligent” ones of the ASD world. They refer to themselves as “Aspies”. Because they have the capacity to share their stories there is a wealth of knowledge of what it is like to live in a Aspie brain. Take some time suffering the internet and you will find Aspie communities everywhere. There are youtube channels, forums and blogs where people with Asperger’s share their thoughts on themselves and their place in the world. It is fascinating. I do know that often times theses individuals would like to connect with others but it’s not so easy. Despite any challenges they face they often state that they wouldn't change their autism even if they could. So in saying that I think it is our responsibility to help all those living on the spectrum to live their best life possible and in so doing that means be aware of their limitations and challenges and help them to the best of our ability.
The point I am trying to make here is we cannot simply know one person with autism and assume to know everything about people with autism. Autism doesn't come in a pretty little box. To clarify let’s first talk about what makes a person autistic (taken from autismspeaks.org):
Social communication challenges
Children and adults with autism have difficulty with verbal and non-verbal communication. For example, they may not understand or appropriately use:
Spoken language (around a third of people with autism are nonverbal)
Tone of voiceExpressions not meant to be taken literally
Additional social challenges can include difficulty with:
Recognizing emotions and intentions in others
Recognizing one’s own emotions
Seeking emotional comfort from others
Feeling overwhelmed in social situations
Taking turns in conversation
Gauging personal space (appropriate distance between people)
Restricted and repetitive behaviors
Restricted and repetitive behaviors vary greatly across the autism spectrum. T
hey can include:
Repetitive body movements (e.g. rocking, flapping, spinning, running back and forth)
Repetitive motions with objects (e.g. spinning wheels, shaking sticks, flipping levers)
Staring at lights or spinning objects
Ritualistic behaviors (e.g. lining up objects, repeatedly touching objects in a set order)
Narrow or extreme interests in specific topics
Need for unvarying routine/resistance to change (e.g. same daily schedule, meal menu, clothes, route to school)
This brings us to the bigger question…how can we help? With 1 in 69 people living with autism in Canada there are going to have to be adjustments made. Autism is a neuro-development disorder meaning there is no cure for it (yes – there are tools to help people living on the spectrum improve in certain spheres but an autistic brain will remain an autistic brain). We have to make place for everyone on the spectrum. Like I have said several times and I will continue to say “if you are born you automatically have the right to the best life possible”. Now that may look different for everyone but as a society we must help our families, neighbors and global community. Simply knowing what autism is is no longer enough. We have to look to the future and find ways to help, support and integrate these unique individuals.
Before I continue I need to share this sentiment with you. I have two beautiful children; my eldest Manisha is an intelligent, self-confidant and outspoken young lady who contributes generously to society. I know her future is bright. My son, Keyan (as I already mentioned) has a life time of challenges to overcome. You know what? I love both my children more then I could even begin to tell you. I work hard to make a space for Keyan because both my children deserve it. I don't want Manisha to feel that she has to forsake her lie experience for her brother. She needs to live her life and know that her brother is being taken care of. I want nothing to hold either of my children back. It’s obvious that Keyan takes up most of our energy but my husband and I work hard to ensure that Manisha is never held back from living her best life too in all of this.
So as S.Au.S. gets ready to undertake its biggest project to date. I think I have to clearly state that there are so many wonderful organizations out there doing the work to advance the cause of autism. Some organization offer respite so families can get a break. Others provide therapies such as; occupational and speech therapies, or ABA and RDI therapies. There are organizations set up for when someone is in crisis and the families can no longer manage things in the home. There are work programs that encourage businesses to hire people on the spectrum. There are also, supervised homes being built for those who are on the cusp of autonomy. Everyone is scurrying to meet the needs of this growing population. There is so much work to be done and a long road ahead.
Therefore, just like the needs vary greatly for each person living on the autism spectrum the same theory can be applied to organizations trying to help. Our mandates are completely different. So many times I have heard people say why don’t you join forces. We cannot simplfy autism – although I really wish we could. Therefore, I encourage you to do the reasearch (or at least continue reading my blog) to come to the uderstanding that autism is a complex disorder that cannot be put in a pretty little box.
Stay tuned for more information on S.Au.S.' upcoming strategic 5 year plan to open a day center for adults with severe autism ages 21+.
Here is a short list of organizations in and around Montreal who's focus is to serve the autism community. All those listed have different missions/mandates.
Leisure programs for chidrren and teens: (S.Au.S.) www.s-au-s.org
Diagnosis, Therapy and Work Programs:(The Miriam Foundation) http://fondationmiriam.ca
Respite: (Centre de Repite au Quatre Poches) http://www.centrequatrepoches.org
Support Programs for families and programs for people with an ASD: (Autisme Monterigie) https://www.autismemonteregie.org
Future Housing Project: (Fondation Vero et Louis) https://ici.radio-canada.ca/nouvelle/1137312/fondation-veronique-cloutier-louis-morissette-maison-autisme