‘We must support children with autism – and their parents’ – UP academic on breaking down stigma and raising support this World Autism Awareness Day

Posted on April 02, 2020

Autism is a global health crisis that knows no borders and – much like COVID-19 – does not discriminate based on nationality, ethnicity or social status. In light of

World Autism Awareness Day, knowing more about the condition and how to manage it may help all of us better support children with autism as well as their parents, their primary caregivers.

The challenge of autism

About 70 million people around the world have autism – for every 10 000 people, 62 have autism – increasing the likelihood of you knowing someone who has an autism spectrum disorder (ASD) or someone who has a child with ASD1.

ASD represent a continuum of cognitive and neurobehavioural deficits, mostly seen in areas of socialisation and communication. Typically, children with ASD do not like to cuddle, will not look at you during social interactions and will try to avoid eye contact. Their expressive language abilities may vary from being completely mute to verbal fluency.

Children with ASD can demonstrate atypical patterns of behaviours, such as unusual attachments to objects, self-injurious behaviours, preoccupation with consistency, and a need for specific structure in routines, their home and school environments. They can be preoccupied with very unusual special interests and are likely to line up toys or other favoured objects; this is a classic behavioural feature.

More than 90% of children with ASD has a sensory processing disorder (SPD) – the child has an impaired ability to register, organise and make sense of sensory information, resulting in them struggling to behave according to set norms at home or school3. Their response to sensation is ill-matched to what the situation requires, so they present with a low threshold for sensation in any or all of the sensory systems (tactile, visual, olfactory, auditory and more).

This is why they might overreact or underreact to sensations: inappropriate outbursts are triggered by a specific sensation on skin (clothing or food), or by movement (riding in a car) or unexpected noises (music). Children with sensory over-responsivity seem to be excessively cautious, become upset with changes in routine and have difficulty with transitions between activities.

On the other hand, those with sensory under-responsivity have an extreme preference for sedentary activities, fail to respond to pain, are unaware of their surroundings and will not respond when their name is called. The sensory-seeking child has an insatiable need for sensory experiences and may climb to unsafe heights, put items in their mouths or touch people and/or food objects to the point of annoying others3.

The developmental outcomes of SPD are problems with gross motor development and uncoordinated or immature movement patterns. Impaired sensory and visual discriminating leads to, for instance, difficulty distinguishing between letters; this means that reading becomes a challenge and further impacts on academic performance4, 5.

It takes a village…

Autism still carries a stigma. Have you considered that some of your colleagues might have a child with ASD and are going home to a highly stressful environment, trying to cope with everyday parenting and being a therapist? These parents must be constantly vigilant when comes to taking care of their child, which could lead to them experiencing anxiety and depression6.

On receiving their child’s diagnosis, parents process feelings of confusion, shock, guilt, grief and loss. Their expectations or hopes for the child’s future change instantly and they become a caregiver responsible for the health care needs and development of their child7, 8, 9. Nelson Mandela said, “It takes a village to raise a child.” We are all part of this village and should support these parents and their children as best we can.

Treatment

The African Charter on the Rights and Welfare of the Child (2001) helped to ensure that children have a right to health, education and special care. However, we still have unmet needs in the current health care and education delivery systems.

The need for supporting services increases with the growing awareness of ASD. Autism is growing as a global health crisis and beyond treatment for the child, the needs of parents are also being realised. They are trained to provide therapy for their child, making them an integral “team member”.10

ASD treatment includes pharmacologic therapy to alleviate symptoms and specific behaviours, such as sleep problems, anxiety, repetitive motor behaviours, obsessive-compulsive symptoms, impulsivity, depression and mood swings.

Treatment also extends to educational and behavioural interventions that address functional communication, socialisation, play skills, cognitive development, proactive approaches to problem behaviours, and functional academics. A team of professionals that include medical practitioners, occupational therapists, speech therapists, psychologists and educators are all involved.

How you can help children, parents, and others affected by autism  

  1. Educate yourself about autism.
  2. Figure out what triggers the child’s disruptive behaviours and remove those triggers.
  3. Accept the child and practice acceptance – provide unconditional love.
  4. Provide consistency, security and safety. Children with ASD function best when there is consistent structure. Be consistent in the way you interact with the child. Keep to routines and prepare the child for a change in the daily routine. Visual schedules could be used. Visit https://ahrc.eq.edu.au/services/fba-tool/help/visual-schedule for ideas on this.
  5. Create a safety zone where the child feels secure and can relax. Consult an occupational therapist if the child present with SPD. Safety-proof the area if they have self-injury behaviours.
  6. Refer to professionals and supporting organisations, which can help with the following, among other things:
    1. A medical practitioner can assist with making the diagnosis and prescribing the appropriate medication.
    2. Occupational therapy can help to decrease the functional limitations caused by SPD and offer parent training.
    3. Speech therapists and augmentative and alternative specialists will address communication development and functional communication.
    4. Psychologists help families to cope with and manage the challenges associated with autism.
  7. Seek support from organisations:

Visit Autism South Africa at http://aut2know.co.za; call them on (011) 484 9909 or email them at [email protected].

  1. In the time of COVID-19, you can do the following:
    1. Try to establish a "new normal" in terms of daily routines. Develop new visual schedules with new routines. While schools are closed, indicate what is going to happen during the day at home.
    2. Use age-appropriate language to explain the current events: “There are germs around that are making people sick, but we can all stay safe by washing our hands.”
    3. Use the picture communication board published by the Institute on Disabilities at Temple University11 to explain what is happening and what to do. Use the free printable version on the website (www.techowlpa.org) where you can fill in information that applies to your situation.

References

  1. Evans B. (2017). The Metamorphosis of Autism: A History of Child Development in Britain. Manchester (UK): Manchester University Press. Available from: https://www.ncbi.nlm.nih.gov/books/NBK436841/
  2. Miller, L.J., Anzalone, M.E., Lane, S.J. et al. (2007). Concept evolution in sensory integration: a proposed nosology of diagnosis. American journal of occupational therapy, 61: 135–140).
  3. Miller, L.J. (2006). Sensational kids: hope and help for children with sensory processing disorder. G.P Putnam and Sons, New York.
  4. Baker, A.E., Lane, A., Angley, M.T. et al. (2008). The relationship between sensory processing patterns and behavioural responsiveness in autistic disorder: a pilot study. Journal of Autism and developmental disorders, 38: 867–875.
  5. Dunn, W. (2002) Performance of typical children on the sensory profile: an item analysis. American journal of occupational therapy, 57: 967–974.
  6. Larson E. (2010). Ever vigilant: maternal support of participation in daily life for boys with Autism. Physical and Occupational Therapy in Paediatrics; 30(1):16-27.
  7. Lilley, R. (2011). Maternal intimacies. Australian Feminist Studies, 26(68), 207. doi: 10.1080/08164649.2011.574600.
  8. Melamend, BG. (2002). Parenting the ill child. In M.H Bornstein (Ed), Handbook of Parenting Vol 5 Practical Issues in Parenting (pp. 329-347). New Jersey, Laurence Erlbaum associates, Inc.
  9. Ambikile, J.S. & Outwater, A. (2012). Challenges of caring for children with mental disorders: Experiences and views of caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es Salaam – Tanzania. Child and Adolescent Psychiatry and Mental Health, 6(16), 1–11. https://doi.org/10.1186/1753-2000-6-16.
  10.  Fewster DL, Govender P, Uys CJE. (2019). Journal of Child & Adolescent Mental Health. Quality of life interventions for primary caregivers of children with autism spectrum disorder: a scoping review, 31(2), 139 – 159.
  11. Institute on Disabilities at Temple University, www.techowlpa.org.

Professor Kitty Uys is Head of the Department of Occupational Therapy in the University of Pretoria’s Faculty of Health Sciences.

- Author Professor Kitty Uys
Published by Hlengiwe Mnguni

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