Speaking truth to power: Behaviour issues in ASD are really lack of understanding issues and lack of proper supports issues.
Do you find yourself justifying features of the ASD diagnosis to family, friends, and even professionals?
It's a very common experience--and not surprising. There is so little understanding of autism in our society that no one recognizes the autistic learner if he or she is average to bright, and communicates in a traditional way (in other words, your child, teen, or young adult can speak).
But here's the truth: the features that got our children diagnosed have nothing to do with his I.Q. or her ability to speak.
The list of ways in which autistics learn differently and experience the world differently than neurotypicals is extensive. These can and often do include:
· Sensory and motor differences
· Challenges in learning life skills
· Difficulty fitting in and developing relationships in our hyper social typical world
· Significant challenges saying what they need, how they’re feeling, and asking for help,
· Sleep disorders
· Digestive problems
· Executive functioning challenges
In many of these differences, the problem is not the autism—it is society’s lack of willingness to accept our different way of being. For example:
· Autistic kids can learn life skills, but have to be taught differently. To do this most effectively, teachers and parents must reference the child's psycho-education assessment, which gives great information about how the child learns. Unfortnately, too few of our Asperger's-type autistics have these kinds of assessments, because schools are very stingy in providing them and they cost $2,000-$3,000 privately).
· They may be able to sleep eight-plus hours, but sleep may come later in the evening. Their body clocks can be off by two, three, four hours.
· They can learn successful social approaches, but these must be taught directly—and taught in calm, accepting environments.
· They often have so many communication challenges (not being able to respond if overwhelmed, not understanding body language, facial expressions, or tone of voice—and poor awareness of what they are communicating with theirs), but these features are either not understood or not accepted as legitimate differences.
Since our kids have no cognitive delays, they can learn non-verbal communication skills like these, but they must be taught directly! The practice now seems to be catching our kids being autistic and then shaming them for it.
One of the autism-related features that has a huge impact on our child’s experience of school are his or her executive functions. These neurological functions allow all of us to do things like:
· Start our work
· Manage our emotions
· Transition for one thing to another
· Manage our time
· Make good decisions
· Be flexible in our thinking
· Be organized
· Plan, prioritize, and sequence our tasks
· Edit our work
· Inhibit our responses
· Pay attention
· Remember what we just learned
This is just a small list of things that are impacted by executive functioning. Kids with ADHD have executive dysfunction (up to 95% of them), but reading the list, perhaps you recognize your autistic child as well? There is a huge crossover in symptoms between ASD and ADHD. On a personal level, I have yet to meet a person on the spectrum who was not significantly impaired in one or more areas of executive functioning.
Most of our children have difficulties with things like transitions, and have a strong need for sameness and routine. This can mean they can be inflexible in their thinking if things change unexpectedly, or if they are asked to do things a different way.
Many also have difficulty with emotional regulation, and heck ya, that’s an issue in autism. Emotional dysregulation can range from children who cry easily and often, to those who meltdown in dramatic ways when overwhelmed and then take a long time to recover.
Though our children may have excellent long-term memory, they can have significant problems with working memory—that means doing something with what they’ve just learned or were just told. They can’t hold the information in their mind for the several seconds needed to go get the items you asked them to fetch, or follow through on a seatwork instruction in school.
The bad news is that executive functioning challenges can have a profoundly negative effect on our child's experience of and success in school. When they are an issue, the child may:
· have a hard time starting their work
· have a hard time with group work
· have difficulty planning a project
· have real challenges in making a choice or coming up with ideas on their own
· have challenges managing their time—often under-estimating how long an assignment will take
· struggle to juggle more than one responsibility at a time
· changing their plans if their idea isn’t working out for some reason
· be very resistant or unable to edit their work
· not know that they need help
· not ask for help
· seem unable to organize their notebooks, binders, desks, lockers, backpacks
· have difficulty following through with instructions that the teacher has just given
The good news is that executive functioning can be improved and there are strategies and/ or tools to support the areas of relative weakness. The challenge is in getting the school to DO what needs to be done. Each strategy has to be taught directly to the child, must seem relevant by connecting it to schoolwork the child and classmates are doing, and be repeated frequently and consistently.
So what are some executive functioning strategies? Frankly, they are cheap and easy—the hard part is recognizing they are essential for the child, not an after-thought.
· Supplement all verbal lessons and instructions with a visual. For example, when you tell a child to bring empty egg cartons and paper towel rolls for art class on Monday, you also include a note in his agenda; when you teach long division, you provide a step by step visual of a question being solved; when you’ve given history lecture, you provide excellent notes that identify the main points
· Use technology to provide timers, due date reminders, online agendas, essay organizers
· Have a predictable daily routine
· Provide visual schedules for each day
· Use a checklist-style to-do list each day or with a multi-step project
· Estimate how long each step of an assignment will take—be sure to allow extra time based on the child’s processing speed!
· Provide frequent check-in for larger projects and assignments
· Assign one ‘chunk’ of a project at a time, and allow the student to submit the finished section for assessment before assigning the next step
· Have two sets of text books—one for home and one for school—or have text books and handouts downloaded into his/ her laptop
· Provide clutter-free work areas
· Provide extra time to complete tests in a quiet, calm setting
· Reduce the volume of work required to demonstrate mastery of a concept
· Highlight the main points of lectures or lessons
· Teach the use of assistive technology and require that the child use it—technology can support slower processing speed as well as many executive functioning challenges!
· Provide simple, unambiguous instructions
· Use highlighters for the most important information on handouts; highlight due dates, main points
· Teach students to follow the rubric to give them a better idea of what a good finished product will include
· Provide models of finished projects when they are assigned.
These are just a few of the supports that can help children who are struggling with executive functioning skills. If you think your child needs help in this area, consider an assessment of their executive functioning skills (which is often done by a psychologist and frequently is part of a psycho-educational assessment). When the assessment shows the specific areas of challenges, ask your school to change the IEP to reflect your child new identified need. You would ask them:
1. to include EXECUTIVE FUNCTIONS in the NEEDS statement (a tiny little box toward the beginning of the IEP document)
2. ask them to include a PROGRAM PAGE to address executive functions. A program page addresses things getting in the way of your child’s academic success which are not specifically related to academics. That means a child might have a program page for social skills, for executive functions, for emotional regulation , or for sensory processing., for example.
The most important thing is to get started. Executive functioning challenges contribute to our children feeling out of sync with everyone, and to the relentless negative self-talk” ‘I’m dumb, I’m stupid. I’ll never be able to do anything right...”, and to the meltdowns that are so exhausting for our children and to us.
Without an assessment, executive dysfunction difficulties often are interpreted as laziness, stubbornness, rudeness , or sloth.
Once we know that there is a biological basis for the challenges, we can start coming up with creative ways to help our children to keep pace and to believe in themselves.