World Autism Awareness Day falls every year on 2nd April. Its main thrust is to awaken the world against “unacceptable” discrimination, abuse, and isolation that people with the disorder have to contend with.
by Dr. Ruwantissa Abeyratne in Montreal
Autism is an example of neurodiversity… differently wired brains lead to different profiles of strengths and challenges …. They're just different. People with autism are asking for acceptance and respect…Attributed to Dr. Simon Baron-Cohen, Director of the Autism Research Center at the University of Cambridge
World Autism Awareness Day falls every year on 2nd April. Its main thrust is to awaken the world against “unacceptable” discrimination, abuse, and isolation that people with the disorder have to contend with.
According to the Centers for Disease Control and Prevention (CDC), about 1% of the world’s population has autism spectrum disorder – over 75,000,000 people which means that this category needs safeguarding because they trust people's words as facts and have a hard time fitting in socially. Their human rights, particularly the right to dignity have to be protected. In this context United Nations General Assembly 67/82 adopted the World Programme of Action Concerning Disabled Persons, which begs the question as to whether autism is a disability. If their brains are wired differently that lead to varied strengths in the autistic person, the need seems to be that the world must address socioeconomic needs of individuals, families and societies affected by autism spectrum disorders, developmental disorders and associated disabilities.
The theme for World autism awareness Day in 2022 is based on United Nations Sustainable Development Goal (SDG) No. 4 – Quality Education - and inclusiveness of those in the autism spectrum therein. According to the United Nations, SDG 4 stands for the need to ensure “equal access to all levels of education and vocational training” for persons with disabilities and building and upgrading education facilities that are disability sensitive and that provide “inclusive and effective learning environments for all.” This Goal stands against the backdrop of Article 24 of the United Nations Convention on the Rights of the Disabled Person which invokes States Parties to recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties are required to ensure an inclusive education system at all levels and life long learning directed to: the full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity; the development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential; enabling persons with disabilities to participate effectively in a free society.
The modalities for ensuring the fruition of these goals are that States Parties must ensure that persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability; persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live; reasonable accommodation of the individual's requirements is provided.
Article 17 can be inked to Article 24 in that the former requires that the person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others. Maria Francesca Spatolisano of the UN Department of Economic and Social Affairs, in a message on World Autism Awareness Day in 2019 emphasized assistive technology as a tool to assist the autistic community and said: “addressing the international community and the key stakeholders in this work must therefore take a broad approach, working to dismantle all barriers. Achieving access to affordable assistive technologies will require the participation of many different stakeholders, including Government, civil society – particularly organizations of persons with disabilities - and the private sector, all of which have different roles to play…Today’s event has provided an opportunity – not only to raise awareness – but to come together to appreciate the opportunities afforded by technology. Let us seize these opportunities to ensure an inclusive world for persons with autism”.
The key issue in all these lofty (and indeed well intentioned) idealistic and clichetic terminology is in the words “Quality Education” and “ “inclusive and effective learning environments for all”. Something seems to be missing here for the person on the autistic spectrum. All the provisions cited above seemingly skirt around the word “disability”. It would be relevant if the United Nations were to consider effective methods that assist the development of the individual in the autistic spectrum that would enable him to be “socially inclusive” and be given “quality education”.
Watching an autistic child enjoy the simple pleasures of life; relishing whatever there is on the table without complaint; exalting in a simple car ride to his favourite haunt; trusting his parents with unreserved innocence; and his total lack of suspicion of anyone, makes me understand why Ivan Turgenev wrote his wonderful short story "Mumu". It is a heart wrenching analogy of an innocent and vulnerable person. In the book, Gerasim, the gentle giant, a deaf-dumb mute whose mental and physical countenance rendered him an outsider, had no fluctuation of hope nor awareness of ominous despair. The imagery of Turgenev leaves one suspended between Russian serfdom and modern day indifference. The rich woman whom Gerasim serves leaves him bereft of the few things he loved, above all his puppy, whom she forces Gerasim to kill, merely on a whim of hers. Gerasim had to fulfil his mistresses wishes.
As far as I know, Gerasim was not portrayed by Turgenev as being autistic. The story of autism is a story of innocence, like that of Gerasim, almost begotten by despair upon impossibility. Their laughter and joy, of simple pleasures felt, follow them through their inevitable journey
One of the effective and acknowledged therapies in this regard is Applied Behaviour Analysis (ABA) which increases language and communication skills; improves attention, focus, social skills, memory, and academics and decrease problem behaviors. Autism Speaks Canada– a global entity for understanding and acceptance of autism - says: “The methods of behavior analysis have been used and studied for decades. They have helped many kinds of learners gain different skills – from healthier lifestyles to learning a new language. Therapists have used ABA to help children with autism and related developmental disorders since the 1960s”.
Social awareness and inclusion which ABA provides is the key to “quality education” – whatever that might mean to the person in the autistic spectrum. ABA “dismantles barriers” which is the first step.
Embedded in the term “education” is the word “sensitivity” which ABA helps achieve in the autistic person. Through positive reinforcement ABA strengthens the individual with self worth which is an essential ingredient for human emotion such as love and forgiveness.
This is the “quality education” an autistic child would dream of as most autistic persons may never marry or have children. No one will dwell in their shadow as they measure this earth, searching for their identity and safety. They may never go into a forest to guide others, nor will anyone see fear in their eyes as they are impervious to evil. Hardly anyone would think that they are made of the mountains and lakes and of oceans far and wide. None would think that they are made of the winter's white snow or of the summer's red sun. Autistic persons may never have their child telling them that together we shook the roots of the tree of life to the barest twigs and found our togetherness.
Maybe the United Nations has got it wrong on two counts: Autism is not a “disability”; and it is not about fitting the person in in a regular education set up. They have abilities of their own. Their education should sensitise them to express adolescent and adult love all of us feel: the musky smell of raindrops on the face of their fiancée; the smudgy mental mist that blotches our secrets; the feel of the heavens of affection drenched in the melodious songs of angels that we encounter, and their laughter and tears should be good fortunes of tomorrow. They should be able to sing with feeling - that their songs skim the river of dreams and the valley of waves, in the bliss of life.
They should feel that their sorrows of the mind are drenched in love and flowers bloom in the sands of their despair. They should have the confidence that one day, like everyone else, they would adorn the love they discover with seven sparkling necklaces that appeared in their dreams and take her home.
They should be able to smile with their eyes when blue doe-eyes smile at them. This should not be only in their dreams.
This article has been written for all autistic children who make their parents understand what real love is.
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