When a child is diagnosed with autism, parents begin to worry about the child’s future. Will their child be independent? What will happen to them once school ends? Will there be jobs or further educational opportunities? Teachers and therapists also work to provide the skills foundation that will lead to future success and meet the goals of the parent and child. It takes a community effort to support a child with autism throughout their lifespan.
Whether we are caregivers or support personnel, we should all keep in mind:
- If you’ve met one child with autism, you’ve met one child with autism. No individual will present the same way. (My two children are completely different because they are individuals.)
- If something works well one day and not the next, we have to adapt and try something different. This is why it’s important to have as many tools as we can in our toolbox and also have fluency with them.
- Information is changing all the time. Let go of past assumptions and beliefs when new discoveries in the autism field dispel old notions.
- Relationships are the most important thing. Without positive relationships, a person will not feel connected, safe, secure and able to trust.
- Make sure a child is stabilized first before anything else. This means they are calm, focused, regulated, feeling well and able to learn.
My two children, Marc and Julia, are now adults. At this point in their lives, I have been able to reflect and look back on what things that we did made the most impact while supporting their happiness and well-being. Here are some of the areas we focused on that have lead to successful outcomes adulthood.
A Reliable Way to Communicate
Linda Hodgdon, SLP, says, “Communication is more complex than “just speech.” It involves multiple skills including establishing attention, taking in information, interpreting that information, remembering past information, and eventually formulating a response. The communication disability of students [with ASD] is not just a problem with expression. It can permeate all aspects of this communication process.”
Children need a reliable way to communicate. This can be through PECS, sign language, communication devices, written text, or other visual supports. Even if a child is verbal, they should still have ways to communicate in case they lose their words in times of anxiety or stress. The spoken word is also transient and not fixed or permanent. Visual supports can provide concrete information and give permanency to it.
Support for communication can also be given in different ways. When Julia began school, she brought two homemade dolls with her named Molly and Morris. They had no mouths so she spoke through these dolls and gave them a voice. She also improved her speaking voice by reading to a dog once a week for 10 years through a public library program. Where has this lead in adulthood? Julia takes private puppeteer lessons twice a month. This has helped Julia understand nonverbal gestures and how these can convey emotions and helped her converse.
Everyone uses visual supports – calendars, daytimers, maps, iPhone schedules, lists etc. Take those away and we’re lost. Visual supports provide clarity, structure, the sequence for events, reminders, instructions, and checklists. They create predictability which lessens anxiety.
Individuals on the spectrum tend to be stronger visual than auditory learners. Did you also know that adults tend to communicate more clearly when using visual supports?
Visuals should evolve as a person matures. A pocket schedule on the wall in elementary school can move to the inside of a binder in junior high, followed by the use of an iPhone in high school. If a person is not technology minded or inclined to write, make up printed address labels with the most common activities on them and peel and stick those into a daytime or on a chart. There are so many ways to use visuals!
We recently used a visual strip for the task breakdown of how to take a shower after a recent bathroom renovation. Julia was used to reading task breakdown strips and her familiarity with these helped her learn how to shower independently after years of taking a bath. Another friend of mine in the UK uses a task breakdown strip to do her laundry, otherwise she’d forget a step and feel anxious trying to remember what to do.
A predictable environment and day will keep anxiety in check. This can be done through establishing routines, using visual supports, and providing preparation for changes and transitions.
Respecting autism neurology, I know that my children need a predictable environment so we’ve created that for them. They are surrounded by things that interest them that can be accessed independently, and we respect their choices. Over the years, we have also encouraged flexibility in the day so that we could introduce new things, prepare for the unexpected, and expand their interests and their world. We’ve been able to do this because at the core of their lives is stability, predictability and mutual respect.
The predicable environment can be easier to create at home than at school since school is a more prescribed place, but there are still many tools we can use like visual schedules and support for transitions that can alleviate anxiety in the school setting.
Attaining Critical Mass
Critical mass is when a person creates their own knowledge based on their experiences and is able to apply it flexibly and to novel situations. It is the true mastery of a skill. Critical mass happens at the point where a person has gained enough information to be successful in situations, activities, or skills for which instruction hasn’t been provided. For example, I know how to measure all kinds of things. Knowing how to do this has allowed me to cook using a recipe, measure parcels for shipments. and figure out how much paint I need to cover the walls of a room.
Think of critical mass as spontaneous generalization. Children on the autism spectrum don’t gain these skills through implicit learning – they direct instruction year after year.
How do you find the time to do this? By embedding skills into everyday routines and activities, which will provide repeated opportunities for practice. This can be done through chores, for example.
My children started volunteering for 9 years at a local Farmer’s Market when Marc was 13 and Julia was 11. They learned how to sign a time sheet, report to a manager, wear a uniform, complete a set of tasks with a certain time frame, and not use tech devices while on the job. When they both started new volunteer jobs, they did them with ease because most jobs have the same format – sign in, a uniform, a manager etc.
Part 2 of this article will be published in April and continue on this theme of what we do now in childhood can support positive outcomes in adulthood. To learn more about this topic, I also have a webinar that may be helpful.