This piece of information is not about the lockdown, wearing masks, avoiding crowds, hand washing, etc. Not because these aren’t important. But because by now, they have been drilled into all of us. All our attention has been concentrated on the COVID-19 pandemic.
In the meantime, many other important conditions, areas, sectors and rights of persons have been left behind. One such condition is Autism Spectrum Disorder (ASD), a common prevalent regressive disorder of interactive communication and behaviour.
To show solidarity with persons having autism, every year, April 2 is celebrated as World Autism Awareness Day. This year, the 2020 United Nations observance of the day draws attention to issues of concern related to the transition to adulthood, such as the importance of participation in youth culture and the community self-determination and decision-making, access to post-secondary education and employment and independent living. Let us take a view on the UN Secretary General’s message:
On World Autism Awareness Day, we recognise and celebrate the rights of persons with autism. This year’s observance takes place in the midst of a public health crisis unlike any other in our lifetime, a crisis that places persons with autism at disproportionate risk as a result of the coronavirus and its impact on society.
Persons with autism have the right to self-determination, independence and autonomy, as well as the right to education and employment on an equal basis with others. But the breakdown of vital support systems and networks as a result of COVID-19 exacerbates the obstacles that persons with autism face in exercising these rights. We must ensure that a prolonged disruption caused by the emergency does not result in rollbacks of the rights that persons with autism and their representative organisations have worked so hard to advance.
Universal human rights, including the rights of persons with disabilities, must not be infringed upon in the time of a pandemic. Governments have a responsibility to ensure that their response includes persons with autism. Persons with autism should never face discrimination when seeking medical care. They must continue to have access to the support systems required to remain in their homes and communities through times of crisis, instead of facing the prospect of forced institutionalisation.
We all have a role to play in ensuring that the needs of the people who are disproportionately impacted by COVID-19 are met during this difficult period. Information about precautionary measures must be provided in accessible formats. We must also recognise that when schools employ online teaching, students with non-standard ways of learning may be at a disadvantage. The same applies to the workplace and working remotely. Even in these unpredictable times, we must commit to consulting persons with disabilities and their representative organisations, and ensuring that our non-traditional ways of working, learning, and engaging with each other, as well as our global response to the coronavirus, are inclusive of and accessible to all people, including persons with autism.
The rights of persons with autism must be taken into account in the formulation of all responses to the COVID-19 virus. On World Autism Awareness Day, let us stand together, support each other and show solidarity with persons with autism.
— António Guterres
To keep this in view, the following strategies can be helpful. They can be practised at home in current situations:
Transition to adulthood is an ongoing process that should begin in early adolescence and evolve throughout the course of a child’s life. For parents and guardians of children with ASD, the transition to adulthood can evoke feelings of uncertainty, unpreparedness and fear, as adolescence can be a time of increasing challenges for individuals with ASD and their families.
Functional limitations caused by established ASD continue into adulthood and often create barriers to independent living in addition to other multiple domains like education, vocational training and employment, social support, housing and healthcare.
But by introducing the skills early and building block by block, we can help individuals with autism gain the tools that will allow him or her to be more independent throughout his or her life. Here are some strategies:
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Strengthen Communication: Through introducing Alternative/Augmentative Communication (AAC) and visual supports. Common types of AAC include picture exchange communication systems (PECS), speech output devices like iPad and sign language.
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Introduce A Visual Schedule: Using a visual schedule with your child can help the transition from activity to activity with less prompting.
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Work On Self-Care Skills: Brushing teeth, combing hair and other activities of daily living (ADLs) are important life skills, and introducing them as early as possible can allow your child to master them.
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Teach Your Child To Ask For A Break: Make sure your child has a way to request a break – add a “Break” button on his or her communication device, a picture in his or her PECS book, etc. Identify an area that is quiet where your child can go when feeling overwhelmed. Alternatively, consider offering headphones or other tools to help regulate sensory input. Although it may seem like a simple thing, knowing how to ask for a break can allow your child to regain control over him or herself and his or her environment.
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Work On Household Chores: Having children complete household chores can teach them responsibility, get them involved in family routines and impart useful skills to take with them as they get older. If you think your child may have trouble understanding how to complete a whole chore, you can consider using a task analysis. This is a method that involves breaking down large tasks into smaller steps. Be sure to model the steps yourself or provide prompts if your child has trouble at first!
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Practice Money Skills: This can help your child become independent when out and about in the community. e.g. when you are with your child in a store or supermarket, allow him and her to hand over the money to the cashier. Step by step, you can teach each part of this process.
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Teach Community Safety Skills: Teach and practice travel training including pedestrian safety, identifying signs and other important safety markers; and becoming familiar with public transportation. Consider having your child carry an ID card which can be very helpful to provide his or her name, a brief explanation of his or her diagnosis, and a contact person.
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Build Leisure Skills: Being able to engage in independent leisure and recreation is something that will serve your child well throughout his or her life. Many people with autism have special interests in one or two subjects; it can help to translate those interests into age appropriate recreational activities.
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Teach Self-Care During Adolescence: Getting your teens into the habit of self-care will set them up for success and allow them to become much more independent as they approach adulthood. Visual aids can be really useful to help your teen complete his or her personal hygiene routine each day. Consider making a checklist of activities to help your child keep track of what to do and post it in the bathroom.
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Work On Vocational Skills: Starting at age 14, your child should have some vocational skills included on his or her training curriculum. Make a list of his or her strengths, skills and interests and use them to guide the type of vocational activities that are included as objectives.Consider all of the ways up to this point that you have been fostering your child’s independence: communication abilities, self-care, interests and activities and goals for the future.
Be sure to reinforce your child with positive feedback once he or she masters each skill and even each step in skill learning. Motivation is critical to learning and as your child becomes familiar and more competent with new skills, confidence, interest and motivation will increase. Keep in mind that each step might take a long time, some more than others, but the ultimate goal remains the same – to teach your child appropriate independent living skills, an important skill as he or she ages into young adulthood.
Be patient. Remember, the transition to adulthood, and teaching the skills that go along with it, is a marathon, not a sprint!
(The writer is Consultant, SVNIRTAR, Cuttack)
