Twelve Things All Parents Should Understand About Autism Therapy
Rhonda J. Greenhaw, MA, BCBA
February 11, 2015
1. Focus on strengths and interests rather than deficits
Children need to feel good about themselves. All too often for children on the autism spectrum, much of the attention they receive is based upon their perceived deficits. In a quest to help children grow, the emphasis of the adults in their life can be on all of the areas in their life in which they are “lacking”. This has an accumulative effect over the course of their lifetime; from the moment they are identified as being on the spectrum throughout the rest of their life, they are tested and observed and seem to never measure up to the developmental milestones. Parents and therapists need to understand that the focus on a child’s deficits can be harmful. Good therapeutic programs will work to uncover the child’s strengths and interests and help the child grow those areas of their life. That creates a positive road to success, and many adults on the spectrum can attest that their interests and passions were their key to employment and positive feelings about themselves.
2. Assessments, observations, monitoring, and some data collection methods can make a child feel like they are under a microscope. Be selective!
From the time a child is diagnosed as being on the spectrum, throughout the rest of their life, they are scrutinized and measured. Over the course of a childhood this can feel overwhelming to a child. Imagine how we would feel if we were constantly watched, having data collected on various aspects of our life, or were constantly being measured to see how we performed? This can have an extremely negative effect on children and parents and therapists should consider the negative effects of observations, testing and assessments and really ask themselves whether the information could be gained in another way. Data collection can be done in ways that are less obtrusive and which do not make the child feel like they are always being monitored.
3. Giving a child on the spectrum choice and voice is critical to development.
All too often I have worked with young people on the spectrum who have never had any control over aspects of their life. In a quest to be helpful, parents and therapists often start by teaching compliance. In many early intensive therapy programs, the lessons begin by teaching the child to comply to the therapists demands. The idea is that by getting the child under the instructional control of the therapist, they are prepared for school and other situations in which they need to pay attention. Children in compliance-based programs are physically guided to comply if they do not follow the instructions. Therapy programs also teach a child to respond to prompts, and all too often children can become “prompt dependent” and then have a difficult time making choices without a prompt from an adult. Compliance-driven, prompt dependent young people can lead to tragic results. I have worked with young people that are so passive and prompt-dependent that they are unable to even choose what color to use in a drawing. Other young people become vulnerable to abuse because they have been taught to comply and follow the instructions of others, so they are at risk of being taken advantage of and mistreated.
4. Teach ownership of their own body as a critical skill
Programs that do train young people on the spectrum to be compliant and prompt-driven need to consider how vulnerable people that always comply to the demands of others are, and programs for young children should teach body integrity instead. Children need to be taught that they own their own body and when something does not feel right, that instinct should be honored. Oftentimes, too, children on the spectrum can have sensory experiences that are painful or overwhelming. Some children who have sensory sensitivities, in a quest to help them “get over it” are forcibly and repeatedly exposed to painful sensory experiences. Their objections may be considered “non-compliance” or they are told that they are over-reacting. This teaches the child to not trust their bodies and that they do not have body integrity, which can expose them to dangerous situations in their life.
5. Teach self-advocacy from a young age
Instead of focusing on eliminating the painful sensory experience, or teaching the child to comply with all requests, teach a child self-advocacy skills. If a child finds certain sensory experiences to be painful, that child should be supported to identify what things trigger painful sensations; every child with sensory sensitivities should learn how to walk into an environment or setting and identify everything that could potentially be painful. Parents and therapists can teach this skill, and can help a child develop strategies to accommodate themselves in the presence of painful stimuli. For example, a child for whom certain noises create painful sensations can learn to put headphones on or to wear earplugs. Parents or therapists can help a child develop tool kits of soothing or helpful items that they can keep in their bag pack or purse. Children should be taught how to speak up and ask for help in situations that become overwhelming, and parents, teachers and therapists should honor that communication and respond to it.
6. Normalize their experiences
For many children on the spectrum, because their needs can seem different than other children or adults, their needs can often be overlooked. I have seen children or young people on the spectrum ask for breaks or indicate that they need something only to have their requests ignored or to be told that what they are asking is “inappropriate”. But people who are not disabled request accommodations all the time – have you ever heard people ask for a television or music to be turned down? How about asking for the heat to be turned up or the air conditioner to be turned on? Those are all requests for physical accommodation! How frustrated would someone be if these simple requests were refused? If I was too cold, for example, and someone refused my request to turn up the heat, I would have to leave the room and go get a sweater to put on – I may also feel very frustrated and disrespected that the person could not attempt to find some compromise or accommodate me in some way. Yet, people with autism and other disabilities have these experiences all of the time.
Because their needs can seem so different from the norm, people are often ignoring their requests for modifications or accommodations to the environment. I once heard that a student on the spectrum in one of my programs requested a break from their support person, and that request, in a speech program, was completely ignored. Eventually the young person on the spectrum, who asked repeatedly and was denied, was given their break because they threw their paper and pencil across the room and grabbed someone. What a tragic error. We need to honor communication and support folks on the spectrum to get their needs met, and we need to help our kids understand that everyone asks for accommodation, so there is nothing wrong with requesting them. In fact, it is extremely smart and habilitative to request accommodations, and teaches young people that they are respected and valued. We do not live in their body, so we should not presume that we know what they need.
7. Don't be barrier to a child’s credibility
We live in a world where, unfortunately, certain standards of acceptability are very narrow. For someone who is “different” this becomes a huge source of frustration and can be very isolating and marginalizing. Some people on the spectrum have interests or behaviors that are unique, and sometimes these behaviors can look odd to others. In an attempt to be helpful or to teach, an adult in their life may bring up their child’s behavior to a stranger, a classmate, or another adult in an attempt to explain the child to that person. Sometimes parents, teachers and therapists want to train the child to interact with others in a way that they feel is normal. For example, oftentimes when I greet a child on the spectrum and they are with their parents, if the child does not respond immediately to my greeting, the parent may turn to their child and say, “she said ‘hi’ – say ‘hi’ back” or “shake her hand”. Other times, parents may reveal private or personal things about a child to another person – even someone they just met - in an attempt to get their own needs for support met or to seek advice. In each of these scenarios, the child’s credibility is diminished to that other person, so in our attempt to be helpful, to teach or to get support, we are actually decreasing the credibility and legitimacy of the young person in the eyes of others. People on the spectrum already have barriers when it comes to being seen as valid and getting respect. The world diminishes the lives of disabled people, we need to ensure that our actions do not increase the size of the hurdle over which they have to climb, and instead, we should seek ways of bolstering their credibility with the public.
8. Let your child navigate social situations on their own terms
When other people have difficulty understanding a child on the spectrum, or if a child uses alternative forms of communication, a lot of therapeutic and classroom time is spent on teaching social communication. This is important. It is vital that we work with our child to help them develop communication strategies that will allow them to be heard and understood so they can get their needs met, develop friendships and function within society. Indeed, most people, and this includes most people on the spectrum, want to have social relationships, and want to communicate with others and be understood. Spending time working to develop functional communication, particularly for children for whom this is a need, is very valuable. However, it is also vital that people have time and spaces to just be themselves. Not every social interaction must be a “therapeutic moment” or be managed. Giving a child space to interact with others in their own way can be just as valuable. I have seen children build incredible bridges with one another when the adult gets out of the way. It is my experience that children on the spectrum, when they feel empowered and their confidence is bolstered, strive harder to communicate and be understood on their own. Oftentimes, neurotypical children (those not on the autism spectrum) will try harder to listen, too, when their isn’t an adult trying to intervene in the conversation. I have also seen this occur between children on the spectrum and adults out in the community; when the adult support person hangs back and gives some space, and when the adult in the community takes the time, both the child and the adult seem to try much harder to communicate with one another.
9. Too much structure can be counter-productive
Too much of a good thing can be bad, and too much support can actually get in the way of a person’s ability develop to critical thinking skills and confidence. Oftentimes, I work with young people who have been educated in highly regulated environments or those whose homes have become “therapeutic homes”. These environments are highly structured and their routines are very predictable. When in this environment, children know exactly what to expect and what is expected of them. In other cases, children have para professionals supporting them in school, or their parent is very anticipatory of their child’s needs, and these adults in their life are the ones who do the problem solving and modifications of the environment to keep things flowing and moving. While this can create soothing, supportive environments, it is also important to help the child understand that life has a lot of twists and turns. If we teach a child to understand and respect their own bodies and needs, if we teach them how to ask for help and support when they need it, then surprises and changes can create incredible opportunities for learning and growth. Children should be taught that they control the level of support that they are given. They should learn that the support person works for them; the support person should not be viewed as the leader – the child should be the leader, and we should teach our children to direct the actions of the support person or to request assistance only when they need it. Aides, para professionals, parents, teachers and therapists should help the child develop confidence about managing their support person, teaching them how to show or describe to the support person exactly when and how they need help. This approach is incredibly empowering, and increases the child’s confidence and ability to problem solve.
10. Supportive failure is just as important as errorless teaching
I think failure is one of the most invigorating lessons that life gives us. Failure, when we feel empowered and confident, can challenge our assumptions and can help us develop different approaches to tackle problems. I see a lot of children on the spectrum, however, denied the opportunity to fail. I think supportive failure, that is failure that will not create irreversible harm or physical or emotional damage, provides important lessons for youngsters on the autism spectrum. Unfortunately, failure is often managed out of learning experiences and programs. For example, cooking programs for children on the spectrum that I have observed can be very prescriptive; all the tools are laid out in advance, the activities are highly planned and orchestrated, and while the child may successfully create something, they experience is so controlled that their learning opportunities are very diminished. Although these types of experiences prevent the kitchen from ending up a mess, but they also prevent important learning opportunities. Cooking, like so many things in life, is enhanced by trial and error. We learn as much from that dish that didn’t turn out so well as we did from the successful ones – maybe even more. Now, I am not advocating throwing kids to the wolves, but giving space for supportive failure provides rich learning opportunities. Also, let your child know that everyone makes mistakes and that learning something new is a process that takes time.
11. There is nothing as valuable as esteem
Children, no matter how much we think they do not understand, know full well when someone does not like them. We need to validate their feelings if they think an adult does not like or if they indicate that they do not want to be around someone. If you are a parent, therapist, or educator, understand that your facial expressions, attitudes and actions convey your true feelings about a person, and if you do not truly like a child, it is obvious to them. It is important to approach a child through a lens of wanting to like them; really getting to know them and learning what is positive and valuable about them. If you are working with a child and you cannot find anything positive about them, you must remove yourself from that situation. Real harm can occur when an adult has negative feelings about a child and continues to work with that child. As parents, we must discover on a daily basis the positive things about our child and tell them about it. We must also be vigilant for adults in our child’s life who focus on the negative and do not convey joy and love around our child. It is incredibly healthy and empowering for a child to be around people that truly like them and see the good in them.
12. Remember that your child gets ONE childhood – this is it!
It is vital to understand that this is your child’s one opportunity to be a kid. Therapeutic programs that have your child spending hours and hours alone in a room with a therapist are unhealthy. Children need to run and play and they learn through doing and interacting and discovering their world. Natural environment teaching is not only good for your child, it improves learning outcomes. Teachers and therapists should work with your child in the environment, following the child’s lead. This creates opportunities for communication and connection. Therapists and teachers should not spend time demanding compliance, but should instead develop a positive relationship with the child, getting to know them for who they are. This actually improves outcomes; a program that demands compliance and just tests or assesses a child’s abilities does not truly get to understand the child. Taking the time to get to know someone is respectful, but it also gets you closer to the child’s true abilities and helps you gain greater understanding of where they actually need support. This also helps reduce your child’s anxiety. When people are forced to comply with something, their anxiety level increases and they become stressed. For a child, they learn best when they feel engaged and are active learners exploring because they are interested in what is happening. Therapeutic and educational programs that embrace this are fun and engaging, and create positive memories and experiences for the child. We want our children to look back on their childhood as a time of delight and discovery, and fortunately that improves outcomes for learning as well. So embrace the fun and follow your child’s interests!
Tunnels and Cliffs
January 27, 2015
Rhonda J. Greenhaw, MA, BCBA
Each year, more and more young people on the autism spectrum graduate from high school and go off to college. I have had the pleasure of having some of these young people as students, as interns, volunteers, clients and friends. Without exception, each of these students has a story to tell about their experiences in college - the good, the bad and the ugly of higher education.
So often, many of the truly horrible stories that I hear about a young person's college experiences are connected to a lack of support that the young person receives during college. What many families are not really prepared for is the nearly complete drop-off of services when their student transitions from high school. Many of us in the field call this tunnels and cliffs, and academic halls have many of them.
Service tunnels are the various organizations, programs, funding streams and agencies through which families have to maneuver to get services. They are referred to as tunnels because they are hard to navigate through and each of the various systems and supports are so separate from one another. In K-12 education, the services work together. There is an IEP team that is comprised of all of the various services, supports and providers that work with the student. They coordinate with one another and can provide a more holistic, intra-professional approach to working with a student.
At a college or university, even the most caring disability support staff cannot provide the same level of support to a student with a disability. In K-12 settings, students might access individualized accommodations to the curricula, speech, OT, social participation support, a para-professional, and other vital services. In colleges and universities, those services essentially fall off a cliff. They vanish. Gone are the ancillary services like speech and OT; the college provides no paraprofessionals to support the student as they navigate through dorm-life, gathering and completing assignments and connecting socially is left to the student to figure out by themselves.
The level of frustration, angst and grief that this type of a situation can create for a young person on the autism spectrum or those with other support needs can be overwhelming. Often the time that the student was most looking forward to - the freedom and exploration that they envision having in school - can become unbearable. Social challenges can also be an area of stress - new faces, cliques, and serious isolation can all affect the students as they go off to college. Sometimes students dropout or have nervous breakdowns as things spiral out of control.
There are things that families can do to mitigate some of these concerns. A student who is well prepared, who can identify their needs and learns how to self-advocate, can do extremely well in college. Below are some tips to help your young person with a disability prepare for their college career:
- Make sure the young person knows about his or her disability - they should know the name of their diagnosis/disability designation and should be able to tell someone, like a professor or a disability support staff person, in 30 seconds or less, the most important things to know about their diagnosis
- The student should understand how their disability impacts them across different dimensions in their life - academically, socially, any sensory impacts, or other ways that their disability needs support
- Young people need to learn how to identify physical barriers or environmental conditions that might increase some of their particular challenges or impacts
- Young people need to understand that disclosing their disability status to a professor or a college is not a sign of weakness and can enable them to access important supports and accommodations; they should be encouraged to register with their school's disability office, and practice techniques for talking to professors about their accommodation needs
- Every young person that has a disability that impacts their abilities should have some tools they can use to help support them when they need it. For example, a student with auditory processing challenges needs to have access to a pair of headphone and know when to put them on
- Students that attend college should know who to turn to for assistance. Not just an office, but the name of someone and email and phone number, of a particular person that they might call upon at the school should things get tough
Finally, there are a growing number of private programs that can lend additional support to a young person in college. If your student needs this additional support, let them know that asking for help is a sign of strength. Advancing Abilities of Wisconsin, for example, has CAPs - College Advantage Program, that provides a higher-level of support for those students that need it. When looking into these types of programs, make sure that you ask a lot of questions, such as what credentials do the program staff have? Have the program staff ever taught at a college or university? How long have they been providing this type of service? What can my student expect from your company in terms of support and time commitment? Asking these questions will help to ensure that your student is supported by qualified, caring people who understand the college environment. A program developed by someone who has never taught at a college or university, for example, might have difficulty understanding the complex academic environment. Getting the right fit for a program can make a world of the difference, and students who need additional support and connect with a quality provider can recover from or prevent serious damage to their college-life experience.
With the right guidance and support, college students on the autism spectrum or those with other differences gain important life experiences, can build life-long friendships, and achieve academically. The most important thing you can do for your student with a disability is let them know that you believe they can achieve their goals and that you have confidence in them.
Rhonda J. Greenhaw, MA, BCBA
January 19, 2015
Have you ever heard the terms "high functioning" or "low functioning"? These phrases are used a lot when talking about people on the autism spectrum or people with other disabilities, and those phrases, although they are quite common, can be very painful for disabled people or their families.
When I tell people that I have a daughter on the spectrum, invariably one of the first questions people ask me is, "is she high functioning or low functioning"? But people are very complex, and it is really difficult to decide someone's functional level. There is a man on the spectrum named Stephen Wiltshire. Stephen is a guy with some amazing abilities. His nickname is The Human Camera, because Stephen, who is on the autism spectrum, is able to record with computer-like accuracy, environments around him. When I teach college students, Stephen is often one of the first examples I tell my students about when I work with them to help them deconstruct harmful language and see people for the complex human-beings that they are.
I have shared a link below to a YouTube video that I show my students. In the video, Stephen is flown over the city of Rome for 45 minutes in a helicopter. He is then taken to a room with large panels of paper, and then for three days he fills in more and more details of the city. When the scientists who worked with him compared his work to the actual city, they found that his work had amazing, camera-like precision.
Yet, Stephen's sister reports that Stephen needs support to complete many of the activities of daily living. Where would Stephen then fall within a low-functioning/high-functioning paradigm? Stephen, like all people, has a range of abilities, and when people are categorized as "low-functioning" because of their support needs, it really does a disservice to those folks, and to society in general. If Stephen's family had not recognized that Stephen is a complex person that can require support, and have amazing things to contribute to society, they might well have overlooked his talents.
But also, when folks are labeled as "high-functioning" because they have some obvious capacities, that can also create problems. Many young people who in the past would have been labeled as having a diagnosis of Asperger's face this dilemma. People perceive them as "high-functioning" without having any real understanding of issues that impact that person, such as sensory-based or processing differences that require supports or accommodations. I have heard many young people that I have worked with report that others have scoffed at or even rejected their requests for accommodations because they have been perceived as so "high-functioning".
In my practice, I refer to someone's support needs, rather than labeling the person. This accomplishes many important things, the more important two being:
1) the emphasis becomes less on what the person can or cannot do, and more on what the person needs
2) it breaks away from the stigma associated with the "low-functioning" label
So watch the amazing YouTube video of Stephen, and make a pledge to get to know people rather than seek out a label for them.