I had been held longer in a meeting than I had anticipated, making me late to arrive at the William’s home. As I pulled up into their driveway, Sam, Josie and their, older sister, Catherine, were walking into their home with Joan, a Para Professional who provides the Williams with community living supports and respite care. “Well, this is a surprise!” Josie explained , as I walked into the house Emma and Jordon in tow. Susan had not shared we would be visiting today. Keeping a routine is an important function of their household. The girls had therapies and interventions that morning, so the news of our visit needed to stay a secret so there would be focus.
As I walked in the house, the girls had to stand before their parents and explain what they had done with their speech therapists and behavioral specialists. “We went to the University’s Student Center,” Josie began,” and sat across the table and had a conversation.” Today’s interventions for Josie were meant to practice conversations in a setting over a table. “It was good today, there were no clipboards or things that make me nervous. It was easier to just talk.” Once it was Sam’s turn to share, she suggested she did the same thing as her sister. “No, you didn’t,” Joan reminded her. “Wait, what?” Sam asked. “You did something different than Josie. What did you do?” Joan guided her to share her experiences of the morning. “Well, I, had to walk around and stop people and ask them questions,” Sam shared. “I asked people what their favorite color was.” Sam struggles with social interactions, so practicing asking questions to create and continue conversations becomes an important skill to practice. These skills practiced in intervention therapies help to form muscle memory in the brains of the autistic person.
“Practicing these skills is similar in concept to a child practicing their soccer drills. You don’t learn to pass the ball during the National Championship game, instead you practice isolated skills a little at a time, so you are prepared for the big game,” Dr. Loring explained in regards to the importance of developing skills of communication where there are deficits. “There are so many unspoken rules in communicating that we learn without really being taught. We pick up on how often to look at people as we speak to them and how and when it is appropriate to look away. We understand how close or how far away to be from a person when we are talking with them without having to stop and think about these unspoken rules.” For some with ASD, those rules will have to be explained and reinforced with practice. This is the kind of practice Sam and Josie were involved with on the day we visited.
As a three-month infant, Josie could not be consoled. She fought against swaddling or cuddling by leaning into her mother. She would not relax. She had to be facing out at all times. “She would not make eye contact,” Susan shared. ” Her eyes would jet to the left or to the right.
Around the same time, Sam, 20 months old, had no speech. She did not babble. She had no words, as would be appropriate developmentally for her age. Often showing signs of frustration, Sam didn’t play. She would line toys up, but she did not play with them. She struggled with gross motor skills, but her fine motor skills were strong. This means she had no problem taking off shoes with difficult clasps, but then would fall as she walked.
The Williams, recognizing both girls showed signs of being developmentally delayed and were showing atypical physical symptoms, sought intervention, calling First Steps. Sam received the first diagnosis. The early diagnosis allowed for her to begin Speech Therapy, Occupational Therapy, Developmental Interventions and Physical Therapy. These early interventions can be essential to long term success as they introduce and teach the social and communication cues that are often missed by people with autism.
“Often when parents receive the diagnosis of Autism Spectrum Disorder when their child is very young, their first questions have to do with what they will be able to do in the future. ‘Will my son go to college?’ ‘Will my daughter be able to achieve this dream or that?’ The honest answer is that I don’t know. But I don’t know those things about any child. I always start with the idea that this child is the same child they were yesterday. If you had specific hopes and aspirations for your child the day before the diagnosis, let’s not knock any of those ideas off the list. Instead let’s work together to formulate a plan to learn the skills they need today, “ Dr. Loring answered in response to my questions about parents learning of their children’s diagnosis. “Parents of older children who are receiving the diagnosis when they are eight, nine, ten, are often relieved to know what they are dealing with and knowing there are interventions available to help their child. Adults who are diagnosed often have the reaction of, ‘This explains so much!’”
Josie’s delays were very different than Sam’s, by a year-old Josie’s language skills were off the charts. However, she had sensory issues combined with other developmental delays allowing for First Steps Interventions. Josie benefitted from Occupational Therapy, Physical Therapy and Developmental Interventions. Her success in language prohibited the need for Speech Therapy. Sam aged out of First Steps, however Josie graduated out, meeting the markers needed to be removed from the program. Josie has a high drive to learn and know why. Her IQ is very high. Beyond having a great grasp of the English language, Josie would make up new languages. Josie would focus in on the things that captured her attention and would stay extremely focused on them. However, in moments of crisis, the verbose and loquacious Josie completely lost her language. In her frustration, Josie could become violent, strong, and dangerous. “We were afraid she would harm herself or someone else,” Susan shared. “She had this intensity. She would tighten up.” Josie was diagnosed with Asperger’s Syndrome and soon Speech Therapy joined the battery of interventions she would benefit from.
Sam’s challenges seemingly lie on the other end of the spectrum. For all of Josie’s intensity, Sam displayed equal sweetness. However, her delays and challenges could not be denied. Sam was not processing language and was falling behind in social development. Between juggling meltdowns and the challenges of delay, Sam was placed on an IEP, Individualized Educational Plan, after taking the Kindergarten entrance exam. As she moved into the education system, problems arose.
The William’s opted to pull the children from public education to homeschool and pursue therapies on their own. This has been a successful decision for them, but it can not be understated the intense time commitment and dedication the William’s must give to the well-being of their daughters. While I was in their home, disrupting their daily routine, Joan moved the girls from one activity to another as the William’s sat and spoke with me. Soon, the girls were being taken to the next planned activity of the day. There is little room for variance on the norms. “If we move too far off the plan,” Susan stated, “We usually pay for it dearly later.”
Before the girls left, they sat and talked with me about what having autism means to them. “It doesn’t effect who you can be,” Sam explained. “I don’t think you have to be treated differently because you have Autism. I think we should be treated as equal. I think Autism makes me really special. I notice things other people don’t. I think I have the ability to show other people that different is just different. Those differences are what make us all part of God’s glorious creation.”
“I want people to understand that just because I am not responding doesn’t mean I am not listening. Sometimes when people are talking and asking questions, I am trying very hard to understand what is being said. I want to respond, but sometimes I just don’t know what is being asked. I want to say, ‘Can you please restate the question?’ I want you to ask the question again but in a simpler way so I can answer it, “ Josie shared. “Sam and I wouldn’t be the people we are today if we were not Autistic. I think we are funny. I forget things all the time. I will start to do something and totally forget what I was doing. I think that can be hilarious.” Sam interjected, “I don’t really know why God allowed us to have autism, I guess we will understand it one of these days.”
As the girls left with Joan, Susan shared, “I like to explain the girl’s autism as they are functioning on a different operating system. Autism is like trying to run IOS on a DOS system. It’s just different.”
The Williams family has intentionally sought ways to improve the present for their girls with an eye on providing them all the skills they can obtain to keep the hopes and dreams of their family as goals. It is beyond a full-time job advocating for, as well as teaching the girls. Beyond their basic required education, the girls are receiving the therapies and interventions that will allow them to live and work successfully in a world that often will misunderstand those differences. And like many pre-teens and teenagers, they enjoy extra-curricular activities like Dance, which adds to the schedule of their day. Diligence to that schedule is necessary for the short term and long-term success of their days. Susan shared with me Sam’s daily schedule, stating, “Throughout any given day this schedule is followed as closely as possible because, if we don’t, regulations issues occur. Her most challenging parts of the day revolve around transitioning between activities and frustration regulation with individual task completion.”
7:00—wake up and morning routine. (she must use a checklist to help her remember all the tasks she has to do to be ready for her day.)
9:00—School and Therapy Begin—Make agenda for the day to help with task adherence and time management. Uses task boxes to work on daily living skills.
9:30-Math and Language Arts daily practice
11:30—Sensory Movement Break
1:00—Social Skills/Behavioral Therapy
1:30—Lapbooks in an Area of Interest
7:00-8:00 Family wind down time
8:00—Begin bedtime routine.
I don’t think it can be overstated, that because each ASD diagnosis is as different and complex as the person receiving the diagnosis, the interventions and therapies that are working successfully within the William’s home will not be guaranteed success for someone else. In fact, the variation of ASD within the William’s home is testimony of the individual needs of each person within the spectrum. Nor should there be an assumption that the IEP’s offered within the Public School System are not a strong viable option for services for children. I entered the research process of this week with very limited information and many assumptions about autism. As tends to be the case, I have learned that the more I know, the more I know that there is so much I don’t know. However, one of the things I have observed with interest is that the very intentional routines, practices and choices of a family living with autism would be beneficial to the mental health of all children. Adopting these intentional skills for all children could be a great first goal in the integration of all neuro-typed people.
To protect the privacy of these precious children, the names of this family have been changed.