So important to the way we work is our primary focus on accepting the client just as they are. Accepting our clients just as they are is key to gaining their trust. Too often autists have been forced to be, do, and act in a way others tell them to without regard to their individual needs. Because we work with the population of the age where little was known about autism in their childhoods, many of our clients weren’t diagnosed until later in middle school and high school, and sometimes into adulthood. The effects were that parents and teachers unwittingly punished “autistic” behavior without considering the actual experience of the child.
This disregard for individual needs resulted in parents and teachers unwittingly punishing “autistic” behavior without considering the actual experience of the child. Today we cannot imagine punishing a child for not learning to walk. But our clients often report stories of adults shaming them due to their temper tantrums, or inability to toilet train “on-time” or ride a bicycle, or learn to drive a car for example.
The following is an excerpt of a conversation with a particularly self-aware and articulate client, S.
S – “You talked about wanting to provide a safe environment today. To achieve this goal for individuals on the autism spectrum, the concept of safe environment needs to be individualized. You will want to include this in [your] evaluation process, although I’m not sure exactly where. Parental reports will be inadequate, and I don’t know how able your typical clients are to express for themselves what makes them feel unsafe.”
Clearly the emphasis here is on the client, and we have certainly seen the wide variations in a client’s ability to describe their experience. Again, the Microview(sm) is needed to determine the factors that the client considers to be essential in feeling safe. What S says below has proved to be common in the clients we see.
S – “Here are some things that make me feel unsafe. There are, no doubt, others that I am not thinking of at the moment.”
⦁ Any attempt to change my internal reactions, e.g. “calm down” or “trust me”
⦁ Any resistance to my statements about myself. Attempts to collect data are ok, but holding on to prior ideas [about me] until the data is in, is not.
⦁ Being asked to do things I don’t understand. This is not fear of the unknown. It results from regularly having bad experiences when I try to comply with such requests.
⦁ Any response to my getting frustrated other than inquiry toward the goal of understanding what’s bothering me.
Note that I am not making any claim that it is reasonable to demand that you avoid all of these things absolutely. I am stating that anytime any of these things are done, I feel unsafe. If you judge that any of these things are worth doing, in dealing with me, I want you to understand that you are judging that something else overrides the goal of providing a safe environment.”
Let’s look at these one by one. What makes one feel unsafe is:
Any attempt to change my internal reactions by saying calm down or trust me. Communications training emphasizes this concept. We try to avoid emotional directives altogether. Simply telling someone to “calm down,” is insulting to an adult and implies they are “doing it wrong” or “shouldn’t be” feeling what they are feeling. Much like “I’ll give you a reason to cry” was used in previous generations, this simply does not work and teaches a young child to disassociate from their actual feelings. In adults this is constantly denied their experience is handicapped by doubt and inability to trust their experience. We want to acknowledge the experience and look for ways to regulate their emotions such that they can problem solve a viable solution.
Any resistance to my statements about myself. Attempts to collect data are ok, but holding on to prior ideas [about me] until the data is in, is not. Most of our clients describe our initial interactions as “data gathering.” So data, in this instance is getting to know the client, and finding out what is important to them. Perhaps learning their values, and particularly that they value their privacy, experience, and ability to build a life on their own terms. Indeed, isn’t that what we all want? So helping an adult find the language to describe their feelings, is key to that understanding. Our goal is to support a person in their desires for their own life. Many autists cannot describe this easily and we often find ourselves providing language for the emotions so that we can truly understand what they feel. From these descriptors we begin to build a plan for strengthening their skills at describing their experience and expressing themselves in a way other can truly hear. The resistance she is referring to here is something like an accusation such as, you’re avoiding the issue. When she claims it is actually her incapacity to do or understand the thing we are asking. Which leads directly into her next point.
Being asked to do things I don’t understand. This is not fear of the unknown. It results from regularly having bad experiences when I try to comply with such requests. I have seen this repeatedly in other clients. In fact I was shocked at the degree to which other autists share this common experience. It makes sense to me that one would have a “fear of the unknown” and resist change if most of one’s experiences resulted in distress or failure. Rarely do I find a client who will describe this readily, but when we look for it, and guide the client to the edges of this realization, invariably they find the words to describe a similar experience. A great deal of trust is needed for clients to get to this point. Then the goal is to maintain trust while teaching strategies for emotional resilience, while describing the hidden rules, or standards of the situation such that the person can understand it. Usually after they truly understand it will take some time for them to be confident enough to try new behaviors in the same or similar situation.
Any response to my getting frustrated other than inquiry toward the goal of understanding what’s bothering me. Like the “gentle parenting” movement now widely shown on social media, we must acknowledge how they are feeling, right now, in this moment, in this situation, and bring forth our compassion for a person in distress. Imagine a life where emotional surprises are around every corner, where one cannot easily anticipate what is expected of me, and perhaps someone is telling me how I should feel, when it doesn’t feel like that at all to me. As caregivers we must deeply listen to discern the actual problem, rather than the one we think is the problem. Back to the first point, we must acknowledge the internal state before setting out to change it.
Sometimes these interactions reveal a greater need for healing, and we often make recommendations for seeing a trauma therapist or use of supplements to manage anxiety, or other medications. We are happy when we can work with therapists, physicians, physical therapists and other clinicians who work with trauma with our clients. Our goal is an integrated adult who has agency over their lives.
Holly