What might the future look like?
Last summer, my husband and I were shopping for a fire bowl for our backyard. Since we knew nothing about them, I wanted to ask for guidance from a salesperson. This young man came walking down the aisle so I inquired if he could direct us. I told him about our vision of having our two autistic adult children, Marc and Julia, sitting around the fire bowl with us in the evenings. He said, “I have an autistic 4 year old daughter who doesn’t speak. Can I ask you what the future might look like because I’ve never come into contact with anyone with autistic adults. I feel like things will never change.”
I remember that feeling very well when my own two were young children. We ended up spending an hour with the salesman, telling him how things have evolved over the years and what we did to build a strong foundation for a successful adulthood.
Neither of my children really spoke until about 3 months before their 5th birthday. They had a few single words, but communication was challenging. Our speech-language pathologist helped us develop appropriate visual supports. We had all of the important things in their world labeled with line drawings teamed with text. I also used photos to show the sequence of an event like getting a haircut or going to the dentist/doctor. I took the grocery store flyers and made a little shopping book with pictures in it of the things they ate. We’d look for those items in the store.
Each child had their own daily and weekly visual schedule to see how their day/week would unfold. This gave them predictability, letting them know what was going to happen next and reduced anxiety. I occasionally added in the world “surprise” on the daily schedule so that they understood not everything is always known ahead of time, fostering flexibility.
Through using the visual supports, reading aloud to the kids, singing, and modeling language they both developed language. Julia is a stronger speaker than Marc is, but both can express their thoughts and wishes.
Marc still struggles with pronoun usage and verb tense, but he is improving all the time. His vocabulary increases by reading books. He can be difficult to understand at times because of having oral motor dyspraxia, but through using the PROMPT method early on, his diction became clearer.
Marc uses a day timer to see any changes or important appointments in the week. The timing of his routines vary each day depending on the activities, but he is flexible because he understands why he needs to do things at a certain time and the day is predictable. Marc wears a watch or carries a little travel clock with him to keep track of the time. He likes precision such as having a snack at 4 pm, but if it’s 15 minutes early or late, he is fine with it.
Both have monthly wall calendars that feature their interests – Marc’s has horse breeds and Julia’s has cat breeds. Calendars are an annual Christmas gift and I change the calendar topic every year.
Julia is quite flexible with routines, schedule changes, and doesn’t mind spontaneity in the day provided it’s an activity that she knows such as going on a bike ride or visiting a favorite store. She likes to use her iPhone to time things such as how long she’ll ride the exercise bike for and she has a set time to nightly karaoke and showering.
Daily Living Skills
Sleeping, eating and toileting were huge challenges in the early years. Marc used to fall asleep at midnight with me lying beside him for 2 hours, and Julia got up at 2 am for the day with no naps. I had 10 years of no more than 4 hours of sleep a night, not in a chunk, while trying to work as a teacher. Neither slept in their own bed until they were 8 years old. We had to buy bunk beds for Julia’s 8th birthday to get her motivated to sleep on her own. Before than, she spent one year sleeping in an inflatable boat that was suspended between our bed and a bench. For several years, she had to wear a ball cap even to sleep. I believe it gave her information on where her head was in a space.
Neither child ate more than 10 foods for many years. Food had to be served in a white bowl with nothing mixed together. They followed a GF/CF diet which improved their health and stuck with mainly meat, rice, potatoes and rice pasta.
Both were late toilet trainers – Julia was fully trained at 6, Marc at 9.5 years. Both could urinate successfully in the toilet by the age of 3, but the bowel movement took much longer. In hindsight, I now believe this was an interoception problem.
Poor sleep habits are a thing of the past. Marc and Julia go to bed at 11 pm with a very set routine. Julia wakes up at 8 am 7 days a week and Marc’s time varies depending on his first activity of the day. Rarely do they get up in the night.
Marc began to expand his diet at the age of 16 while working at a farmer’s market. He now eats just about everything including Indian, Chinese, and Greek food. Julia just added fruit to her diet for the first time at the age of 22 after her doctor told her she had low blood pressure. She made this decision for herself and eats almost every fruit, but only at breakfast – still no veggies. I have not given up on adding them yet. Both take daily vitamin supplements which they accepted taking in their teens. They still eat from the white bowls, but are flexible with food presentation when eating out. Neither of them ever gets themselves a drink of water so we support hydration throughout the day with water bottles.
Marc struggles with bowel motility and needs support to keep regular. Julia still doesn’t feel when she needs to go until she is ready to burst. She is getting better all the time at recognizing and interpreting her internal body signals, particularly around anxiety.
Attending school had many ups and downs over the years because it was hard to find the right fit. Marc needed specialized support throughout his school years and this worked well for him. He was in an inclusive setting for non-academic subjects and interacted with many students. He loved school, was well liked, and thrived in that structured environment. He had some great work experiences such as working at the public library which expanded his interests.
Julia hated school from the moment she started kindergarten and couldn’t wait to graduate. She started in a fully inclusive setting but by 6th grade, her stress levels were so high that we had to find a more supportive and smaller classroom setting for her. Once she was in high school, she bonded with her teacher but for no good reason, she was moved to another class in 11th grade which destroyed her trust in everyone at school. She never recovered from that experience and still can’t talk about it now without feeling upset.
We really tried to use their interests to help support their learning and expand on those interests. Interests are a strength and can be used in so many ways! For example, Julia’s love of cats lead to an excellent volunteer job as an adult. Marc loved singing and dancing from babyhood and we used this passion to teach him many things. He started going to concerts at the age of 15 and is now a serious supporter of arts and cultural events.
We wanted our children to be lifelong learners and they have embraced learning new things as adults. Marc has taken dance classes, horseback riding, drumming lessons, music, gardening, literacy tutoring, yoga and fitness classes. Julia studies puppetry, attends a community art class to learn how to draw anime, yoga classes, computer literacy, cooking classes, squash and curling lessons. In general, she prefers one on one instruction rather than being in a group; Marc enjoys a mix.
Both are avid readers and enjoy all kinds of films. Marc loves documentaries and attending lectures on topics of interest. He loves to go to a museum or gallery and listen to an audio guide to enhance his learning.
Where are we now?
What I do feel good about is the community we have built around our adult children, which started when they were very young. They still have many people in their lives from when they were in elementary school. Relationships are important at every age and stage of life. Without positive relationships, a person will not feel connected, safe, secure and able to trust.
The most important thing I’ve learned is to accept my children for who they are. I’ve always let them know their unique perspective is interesting and adds to the world. There is no limit to what they can learn or for how long. Marc tied his shoes for the first time at the age of 26. I learned to figure skate for the first time in my 40s. New experiences happen all the time.
I used to think there was a finish line to cross; there isn’t because the line keeps moving and evolving, as it should be. Time doesn’t stand still and nor will our kids.
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