I recently came across an article TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW © (2005 ELLEN NOTBOHM).
It was an interesting read that discussed how far our understanding of autism has progressed in light of new knowledge and research. Once thought “incurable”, those diagnosed with autism have shown that there is potential to manage and compensate for some of autism’s more challenging features. I would also add my own comment that the profile of autism in the community has increased substantially, along with the understanding of what neurodiversity brings. We still have a long way to go, but progress has been made.
Autism is not a single set of defined characteristics that affects every neurodiverse person. Rather, each individual may have varying elements or characteristics which will impact differently and often inconsistently. One of the difficulties is that a child that is autistic may look like a neurotypical child, but their behaviour can be difficult to manage and understand by those around them unaware of the diagnosis.
Autism is a complex disorder, but generally speaking it comprises of four primary features: sensory processing challenges, speech/language delays and impairments, difficulty with social interaction skills and consequential self-esteem issues. But as mentioned above, characteristics vary in degrees between individuals and subsequently their needs and treatments will vary. Notbohm lists ten things that autistic children wished others could understand: Summarised these are as follows:
- I am first and foremost a child with an autistic condition. Autism is a component of who I am as a whole, it is not what I am in total. I am as three dimensional as any neurotypical child, with interests, quirks and personality. I don’t want to be limited or defined by a diagnosis, with assumptions made about my capabilities. I will respond, like any other child, to expectations put upon me. If you have low expectations of me and underestimate what I can do, you’ll sap my confidence and preparedness to try.
- My sensory perceptions are not neurotypical. The way I perceive smells, sounds, sight, taste and touch is super sensitive. What seems normal to others is overwhelming to my senses and can make exposure to day to day things difficult. At times this hypersensitivity is too much and I react by withdrawing, being angry or sometimes screaming or acting out in other ways. This is a reaction to what is going on for me, not a behavioural outburst. Lots of sounds and noises that may blend into ambient sounds for others are hyper acute to me and I cannot process them all at once. I overload. My acute sense of smell is affected by scents around me. A slight bad smell to you is overwhelming to me to the point of causing nausea. I am visually oriented, and the bright lights and visual impacts can overstimulate me to the point of losing focus and feeling disoriented. My vestibular and proprioceptive senses are affected which can mean I lose the sense of where I am at in space. A frightening sensation.
- It is important to assess what I am capable of doing versus what I choose not to do and it is important to distinguish between the two.
- Interpretation and comprehension of receptive and expressive language can be difficult for me. I am not deliberately choosing not to listen, it is that I can’t understand you. The best way for you to speak to me is to be direct and plain in your expression and language so I understand what is required of me. Then I can comply with instructions.
- I am a literal and think concretely. I don’t understand idioms or non literal expressions. I prefer direct communication saying exactly what you mean.
- I cannot always verbally express exactly how I am feeling. It would be helpful to me if you could look for and read some of the other signs I exhibit such as withdrawal and agitation when I am in a state of being overwhelmed. Please be patient with how I express myself. On the other side of this, I may repeat vocabulary and expressions well in advance of my age through echolalia, or repeating what I have heard. This is a means of compensating for language deficits and creating a response when one is expected of me.
- Because I have difficulty verbally expressing myself I am more visually oriented. It really helps being shown how to do things (several times helps!) rather than verbal instruction. Visual schedules set out expectations so I know what is coming and can be better prepared. When I’m younger, using photographs or drawings or other visual representations helps me to understand what is going to happen. Even as an older person I still benefit from forward planning.
- Focus and build on my capabilities rather than focusing on my limitations. Like any other child, I’ll do better with a focus on strengths and positives rather than negatives. No one likes to feel like they have failed. There is more than one way to do things and sometimes trying different ways can help achieve a goal.
- I’m not good at small talk or starting conversations, so sometimes I’ll need help socially. I like to be included, so it would help if you could encourage other kids to interact with me in play activities to start things off. I’m not good at interpreting social cues or facial expressions, body language and emotions. I’ll need some help to understand appropriate social responses in different situations. There are lots of tools to help with this. Caring Cats – Kindness around town and A Day In The Jungle – Social Emotional Bingo are some fun games that can teach me skills in an enjoyable way. Structured activities work best for me socially.
- Be aware of what my triggers might be to help avoid sensory overloads. Meltdowns are even more traumatic for me than they are for you. So pay attention to situations that may cause me to be overstimulated. It may not be uncommon for me to be more prone after a day at school when my senses have been stressed. My meltdowns are a way of telling you I am not coping with an element of my environment. Please also keep in mind that I am prone to other medical conditions such as sleeping disorders and gastrointestinal problems. A lack of sleep and proper rest can impact my behaviour as can foods and food allergies that make me feel unwell.
- I did not choose to have autism and cannot help the impact it has on me. Please try to be understanding and adjust expectations accordingly. I need unconditional love and support, guidance and assistance to help me along the way. Remember, it is more difficult for me than you.
Finally, the author stresses than patience is the key to managing your child with autism. Some of the most famous achievers such as Einstein, and Mozart, Tesla and others had autism. Build on my strengths and abilities. I may not be great at physical sports, casual conversation, eye contact and social interactions, but I have great focus and attention to detail and can think and see things that others may overlook. But I need your patience, guidance, advocacy and support to help me maxmise my strengths.
It is easy in our role as parents to see things through our own eyes. Understanding the experience of a neurodiverse child may help with creating strategies and day to day management tools to achieve the best outcome for all.