Successful Adulthood Starts in Childhood – Part 2
This blog post is the second part of Successful Adulthood Starts in Childhood– Part 1. It is a continuation on the theme of what we do now to support children can lead to positive outcomes in adulthood.
Sensory processing involves seven systems:
- Tactile (touch)
- Vestibular (balance)
- Proprioception (body awareness)
- Visual (sight)
- Auditory (hearing)
- Gustatory (taste)
- Olfactory (smell)
Difficulties with the integration of these sensory systems can look different in each person. A person can under-react or over-react to stimuli and move between both of these responses.
Paula Aquilla, OT says:
Many children and adults with autism experience challenges in processing sensory information from their own bodies and from the environment. Sensations, like the sound of classical music, the touch of the bristles of the toothbrush or the brightness of the morning sun through a bedroom window may be so strong and overpowering that a person can feel panicky and need to escape. At this point in time, research has not found the answer to ‘why’ a person has sensory processing challenges. What research does support, however, is that many people on the autism spectrum do have challenges with sensory processing and with making sense of sensory information.
If you see that a child is struggling with sensory sensitivities, it is important not to ignore the issue and have an assessment done by an occupational therapist (OT). If you are on a waiting list for an assessment or don’t have access to an OT, you can do some informal observation by using a checklist that can be found in either Answers to Questions Teachers Ask About Sensory Integration or Building Bridges through Sensory Integration. Figuring out a person’s sensory profile can help develop an effective sensory diet. A sensory diet has nothing to do with food; it includes a series of physical activities and accommodations tailored to give a child the sensory input they need to help them regulate and be in the right “state” to learn, pay attention, and feel comfortable. By developing a sensory diet, a child can learn to recognize when they are dysregulated and know what to do to help themselves to feel better.
Sensory issues continue throughout the lifespan so it’s important to address them. Paula says:
We often make the demand of people with autism to accommodate the environment and ‘put up’ with sensation that they may find overwhelming. This may not be possible. Learning how to support people with autism through a sensory integration ‘lens’ can facilitate the functioning of their nervous system and enable their expression and successful interaction. Understanding that others can perceive sensation differently can help us keep an open mind and problem solve solutions for people on the autism spectrum.
Interoception is the 8th sensory system. I have listed this separately because it is a sense that is still not that well known or the role it has. Interoception allows us to feel our internal organs and skin, gives us information on the body’s internal state, and helps us feel sensations such as pain, thirst, hunger, body temperature, muscle tension, and fatigue. It also sends us emotional cues such as a fast heartbeat and upset stomach may mean you are anxious. My daughter, Julia, describes anxiety as a rising feeling in her chest. She recently said she couldn’t sleep after an upsetting incident because she was “focused”. What she meant was, she kept thinking about the incident over and over again and what to do about it.
Understanding and increasing interoceptive awareness is important because it can unlock the reason for many issues around toileting, eating and emotional regulation. If you want to learn more about interoception, I would suggest listening to Kelly Mahler’s webinar on this topic.
Knowing how to relax is an important life skill. If we teach relaxation skills when a child is young, they will have the tools into adulthood to calm down when they feel anxious or upset. For young children, I really like Kari Dunn Buron’s book When My Worries Get Too Big. Kari also has a 6 minute YouTube video on how to do her relaxation exercises from the book.
Other relaxation ideas can be listening to classical or other calming music, yoga, deep breathing or meditation. My son, Marc, had an aide when he was 4 years old who taught him how to relax. He still uses her music and yoga breathing techniques to this day at age 24. A relaxation plan should be a part of every IEP.
Interests Support Happiness and Well-Being
Pursuing interests makes life enjoyable. Supporting interests by giving opportunities to engage and expand them contributes to a higher quality of life. Interests are:
- Motivating – People devote more time and energy to something that interests them.
- Engaging – Participation levels are higher if a person is interested in the activity.
- Conversation starters – Talking about an interest can encourage conversation.
- Friendship builders – Our friends tend to share the same interests as ourselves.
- Skill building – Interests can be the platform for learning new skills.
- Employable – An interest in something can lead to a job or work experience. Marc loves reading and had a two year work experience at a public library. Julia’s interest in cats has lead to a volunteer position with a cat charity.
- Calming – Nothing feels better than engaging in something familiar and loved.
- Life enhancing – Marc’s love of chamber music has enhanced his yoga practice and workouts.
- Expandable – Expanding interests increases knowledge, fosters growth and keeps life interesting.
Addressing Challenging Behavior
Think of behavior you observe as just the tip of an iceberg; below the surface of the waterline lies the cause of behavior. We need to delve below the waterline and address the root cause, not the behavior itself.
If a person is able to self-regulate, use calming strategies, can interact well within an environment, and express needs and wishes, you will likely not have challenging or distressed behavior from that person. They have effective ways of communicating and coping. If the person being supported is exhibiting signs of distress, something is amiss and that needs to be explored and understood.
Changing the lens through which we view behavior can start with the language used to describe challenging behavior – words like obsessive, controlling, manipulative, deliberate place the blame on the autistic individual. Carers often feel shame and guilt about how a situation unfolded, but we have to reflect and review how we are handling things and be honest about what isn’t working or makes us uncomfortable. We have to:
- evaluate our contribution to a stressful or challenging situation
- question our response and what we are doing to contribute
- ask questions and examine to gain deeper insight into why a situation escalated to a crisis point
- identify and eradicate harmful practices such as restraint and seclusion
- not focus on the individual, but recognize that the whole system around that individual has an impact on well-being
- foster better relationships between staff and service users, parents and children
- look at staff/parental stress levels by debriefing after a crisis situation
Figure Out the Causes of Challenging and Distressed Behavior
Challenging behavior occurs because of high levels of stress, physical discomfort, or the lack of physical or mental well-being. By identifying the causes rather than focusing on the behavior itself, this can reduce behavioral situations while improving the person’s quality of life.
Some possible causes of distressed behavior are:
- Physical Health – lack of regular exercise, constipation, dental problems, undiagnosed conditions such as diabetes. Pain is a subjective emotional response and the physical experience of it has to be interpreted. This is where interoceptive awareness comes in.
- Lack of Structure and Predictability – Having a predictable routine is calming. All of us need routines to keep ourselves centered.
- Anxiety – Learn to recognize the early signs of anxiety and support with calming strategies before things escalate. (Marc and his hair pulling)
- Sensory Overload – When the sensory systems become overloaded, a person will feel overwhelmed. Learn the sensory profile of the individual and what help they need to regulate. Look at developing a sensory diet. Have tools available that help with stress such as a ball to squeeze or a fidget toy. Address interoceptive awareness as well a person can learn to interpret their own body signals.
- Frustration – Can happen due to communication issues, boredom, or lack of autonomy.
- Demands and Requests – The main cause of distress is demands from carers. Studio III UK found that 65% of incidences of distressed behavior were preceded by a demand or request from a carer.
Successful outcomes in childhood that lead a positive adulthood come from relationships built on trust, respect, and understanding. It is not our job to change a person, but rather to find the right supports to help them feel comfortable, safe and secure.
The topics discussed in Part 1 & 2 of Successful Adulthood Starts in Childhood are about understanding that what we do in childhood will affect the outcomes for adulthood. We can make the day great with sensory and movement breaks, relaxation, giving choices, getting rid of unnecessary boundaries and rules, and allowing time for the pursuit of interests.
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Would you mind sharing the article or citation from Studio 3 UK about 65% of distressed behaviour was preceded by a demand. Most grateful.
Shirley, you will find it in Dr. Andrew McDonnell’s article on page 26 of the Recovering Behaviorist. https://drive.google.com/file/d/1DI2CuQyCDZUPfWYWC41TJ-i2_dOIUlWL/view
Can you guide me in what I can do most and best to help my 2&1/2 year old ASD granddaughter when she comes to visit one week a month? Most recently we discovered she has a “lazy eye” and we are getting her an eye exam with a pediatric ophthalmologist. I’m concerned that my granddaughter may try and pull off her much needed corrective glasses once she gets them, since she doesn’t like her hair brushed, or nails clipped, or screams if you try to even put a bandaid on an ouchy. Nearly every visit with my ASD grandbaby each mo., is like the movie “50 First Dates” where we have to get reacquainted every visit. And what she like to play with or do, or listen to music wise,etc., last month, may be of no interest to her this month. She has not shown any bonding to any stuffed animal or toy in a consistent ongoing manner. (Note: My ASD 2&1/2 year old granddaughter has had a lot of trauma in her early years. When my ASD granddaughter was three weeks old, her BP mother took my granddaughter to live in another state, away from her Daddy(my son), with her Mother and other grandparents. My ASD 2&1/2 granddaughter, as I was sharing, only gets to see her Daddy, and us ,her other grandparents, one week a month.)
We are just thankful most of all that my beloved and cherished ASD, 2 1/2-year-old granddaughter knows how deeply she is adored and loved and cared for by her daddy, my son, and myself her “Graham Graham “and the rest of my family here which is her “Granddad”, and her Uncle Jonny and her Aunt Jo! She remembers us and loves us, and when she’s in our home she acts completely at home like she belongs here , which is exactly what we want her to feel! Very loved very much a part!
Melanie, with the glasses there may have to be a strap put on them to hold them on her head. I am not sure what all of the options are to keep the glasses on, but removing them is a common problem with two year olds in general so the ophthalmologist will know what to do.
What your granddaughter may be experiencing is not understanding object permanence – https://www.healthline.com/health/parenting/object-permanence#What-is-object-permanence? In a child with developmental delays, they may not realize the person exists when they are not present. This will improve over time with maturity and development. Seeing each other only once a month means there is a 3 week break in between visits. One thing you could do is have photos available and ask your daughter-in-law to reintroduce those days before the visit to refresh her memory of you. I would also have one thing that is consistent that happens when she visits with you to keep her memory of the situation strong. This could be an activity like baking together as most children love to do this and will have strong memories of it. Another idea would be to think of some outdoor activity as our strongest childhood memories tend to be of the outdoors.
Here is a little article about what grandparents can do – https://autismawarenesscentre.com/12-ways-make-difference-autistic-grandchild/
Here are some ideas for outdoor play- https://autismawarenesscentre.com/playing-outdoors-building-skills-exploring-and-creating-memories-for-those-with-asd/