April marks Autism Awareness month. All around the world-famous landmarks have been lit up with blue lights, a great way for the world to notice that Autism is real, it impacts more people than we can imagine and yet, there is still so much to learn about the condition.
There is no doubt in my mind that parenting is the most difficult and demanding job of all, and this is ever more true in the case of parents with children on the autistic spectrum. Autism impacts many aspects of a family’s life:
- Anxiety, depression, and exhaustion take their toll on the physical well-being of caregivers
- There is a huge financial burden due to providing medical and therapeutic care, as well as the appropriate specialized toys and equipment and finding the best school
- It adds strain on the parent’s and siblings’ relationships. Parents have less quality time together and siblings often feel overshadowed and left out by the added attention and care that the autistic member of the family needs.
Ask any adult or adolescent about what they found most difficult in living with Autism and they will mostly confirm that dealing with the sensory elements of Autism was their biggest hurdle. At every moment in our 24-hour day, our senses are inundated with new and old sensory input, which gets filtered appropriately in order for one to function effectively. Many autistic children have great difficulty with processing sensory input from the environment and added to that, they have great difficulty communicating what they don’t like about the sensory input.
Autistic children are typically sensory sensitive with either low or fluctuating thresholds, meaning that they are hugely affected, (often negatively), by sensory input from their environments. It is just too loud, too bright, too tight or too fast for them. They experience sensory overload on a constant basis and they really battle to cope with this. Their withdrawal patterns and poor social skills are not necessarily caused by sensory overload but are augmented by their sensory issues. Children on the autistic spectrum need consistency, routine and structure. Unpredictable and sensory overloaded environments (like shops and shopping malls) are very difficult for them to cope with, which typically will cause them to throw tantrums, get aggressive and/or withdraw from such environments.
Sensory meltdowns occur when there is some form of discordance that happens in one or more of the sensory systems (touch, taste, sound, sight, smell, movement). Low blood sugar levels are also of relevance, as lowered blood sugar levels heighten all the senses. Remove the child from the distressing environment and take him to a safer and calmer place.
These meltdowns happen quickly and without warning. The best advice for parents is to try not to over-protect these children or to shield them from stressful environments. Learn to anticipate which sensory system overloads the quickest and be prepared. Exposure to new and uncomfortable environments needs to be done in a gentle and calculated way (when the child is calm and regulated) as it helps them learn to anticipate, to adapt to and to manage these environments. A portable sensory toolkit can be taken with you whenever you are away from home.
PORTABLE SENSORY TOOL KIT
- Sunglasses (to decrease the effect of bright light)
- Baseball cap or wide-brimmed hat (for decreased visual stimulation)
- Ice cold water bottle with a sports cap for sucking water or an ice-cold juice with a straw
- Chewy snacks, like biltong, dried fruit, chewing gum
- Soundproof headphones for very loud environments
- Change of clothing (long-sleeved t-shirt to avoid unwanted touch)
- Deep bear hugs – calming effect
- Deep breathing – the universal calmer
The senses are thus vital in coping with Autism. Understand it, use it wisely and learn to look at people and environments from a sensory point of view.
Lastly, parents, you are the voice for your autistic child, you are their champion, you fight for their cause and you love them now as you did on the day that they were born. They are still the same children who love you for always being there for them, even when they cannot tell you themselves. You are the one that they depend on to tell the world that they are not less because of a diagnosis or label.
Annabella Sequeira holds a BSc (Occupational Therapy) degree from the University of Cape Town, backed by 22 years of experience in both the public and the private sectors. She has extensive practical experience in the area of Sensory Integrative Dysfunction in children and is passionate about empowering others to improve functionality and quality of life.