Opportunities for people on the Autism Spectrum and Acceptance of Differences
A central slogan of the neurodiversity movement is the emphasis on strengths and the acceptance of differences of those affected with autism, ADHD or other neurological deviations. Due to divergent neural pathways, representatives of the movement call for the environment to be adapted to the individual instead of the individual adapting to the environment. For example, Greta Thunberg, as a person affected by hearing sensitivity, points out that people should wave instead of clap at events. A radical group of "neurological minorities" even questions that individuals with autism require therapeutic intervention. However, this prevents developmental opportunities and fails to address mental health issues for those who suffer from themselves or have significant limitations (Baron-Cohen, 2017). This is true for high functioning individuals who want to change their stress level, their anxiety, their depression, school or work issues. Of course, communities, schools, and workplaces should be considerate of problems of affected individuals; on the other hand, it must be kept in mind that individuals with autism can also adapt and are entitled to special help. In addition, therapy needs of parents and siblings of children and adolescents on the lower end of the autism spectrum need to be heard.
The emphasis on the strengths of people on the autism spectrum and the desire to adapt the environment to the individual is understandable. It is important to point out the positive characteristics of the so-called "Aspies" (Baumer & Früh, 2021). On the other hand, a radical rejection of therapy and behavioral change has significant negative consequences for parents and affected individuals. Especially parents with children at the lower end of the spectrum or severe behavior challenges need targeted help that goes beyond acceptance and environmental change. Instead of extreme polarization, opportunities of affected individuals and rights of their families at both ends of the autism spectrum should be considered.
Extreme representatives of the movement have presented the personality of the individual with autism as unchangeable and rigorously rejected changes in behavior through therapy. In general, it remains open what is understood by personality and which behaviors are regarded as unchangeable components. In addition, the question arises what does unchangeability of behavior mean for the long-term chances or goals of those affected on both ends of the autism spectrum? What does the demand for acceptance mean for the families and the social environment of the affected person?
For example, should a non-verbal child who is contentedly twirling a grass in a meadow be "conformed to the norms of society" through therapy? (Comment of a blogger against ABA).
Should we just wait and see if the child who doesn't speak a word at age five suddenly starts talking like a waterfall after all, or are we missing a critical language period by starting therapy even later?
"Is there anything you can do to stop him from grabbing his crotch all the time?" the seven-year-old brother of the non-verbal teen with ASD whispered to me in shame?"
What about the troubled eight-year-old who spends most of her school time under the radiator of the class, rather than benefiting from the lessons and his peers?
Should a strategy be developed when the high schooler repeatedly approaches the kissing couples in the schoolyard proclaiming loudly, "I'm the love master - can I help you?"
Parents are often under ongoing stress, as in this example: "My 30-year-old son answers with only three utterances, "yes," "no," and "I don't know," and hasn't left the house in six years. What can we do?"
This statement from a mother shows that tolerance has limits: "I often lock myself in the bathroom because I can't stand my (adult) daughter's constant tantrums. Do you have any advice?"
Those involved also often struggle with years of insecurity, anxiety, depression and isolation. "Why am I so uncomfortable around people and shunned by my peers?"
What about the decision by facility staff to tolerate the refusal of personal hygiene for an adult with ASD during the week, leaving parents to take over on the weekends?
And what about the minor abnormalities such as certain communication patterns, monologues, constant topics, "sticking" to adults, laughing for no apparent reason, jokes that no one understands, etc.?
The list of the above challenges or personal idiosyncrasies of those directly affected, as well as the impact on their families, teachers, classmates, or instructors, could be significantly extended; but which examples require tolerance and understanding and which demand for a change in the affected person's behavior?
Obviously, when there are significant limitations to daily living as well as reduced long-term developmental opportunities, action is needed. This is true for children and adolescents with self-injury, destructive behavior, and lack of toileting skills. Reasons for therapy and targeted support are also obvious when a child cannot talk or shows inadequate communication and social skills, Severe school, study and work problems also should be a focus of intervention. A small comparison: if you show a surgeon your broken arm, he will probably try to heal it by putting it in a cast or a brace restore its full function. As a behavior therapist, I feel the same urgency for the development of language: especially since research shows that there are critical periods for language, one should not waste time to develop non-verbal or verbal communication.
In the case of milder behavior challenges that are merely seen as "annoying" or "unexpected" by others, the acceptance of difference may be the remedy of choice. Often the neurotypical group of peers perceives certain peculiarities as "uncool," "annoying," or as in the above example, "shameful." Here, there is a risk of exclusion, loss of friends, or a desire to have distance from the affected brother/sister.
What if, for example, personal distance becomes a problem and the 14-year-old daughter hugs everyone in the supermarket? Not always can an expansion of one's tolerance or references to the autism spectrum impress strangers and provide long-term safety for the child.
It is true that conversations with parents, siblings, teachers or sports coaches can help, with trying to change the understanding of difference. On the other hand, every bus or train ride or a walk into town can become a gauntlet, especially for siblings of children and adolescents with highly conspicuous behavior. With all due respect to the necessity of acceptance, a targeted development of positive alternative behavior makes sense in cases such as this.
If possible, the perspective of the person affected should be included in a decision.
Changes in the person's behavior often have a chance if the motivation to change exists or can be awakened (Baker, 2017). If possible, a good guideline is to ask the person about his or her short- and long-term goals. Together, they can consider whether certain behaviors are compatible with their own goals or should be addressed.
After consulting about ways to make friends, a mother reported the following about her son Mark: Her son sat down in the sandbox with an unfamiliar child and asked him if he wanted to play “Flooding rice paddies”. After the boy’s distraught turning away, the mother took her son aside for a moment. She reminded him that he could play his favorite game, "Flooding rice paddies," but he should consider that the game is unexpected for many children and he would certainly not make a friend with it. The clear alternative, "Do you want to make a friend or flood rice paddies all by yourself?" was enough for Mark to suggest to the boy to “play mud balls”, which the two then played consensually for more than an hour.
If it is an important goal of the person with ASD to belong, it can be useful to discuss even insignificant idiosyncrasies and decide together whether, for example, the high-waisted pants with the tightly tucked-in T-shirt should be changed and the consequences of being considered "uncool" accepted.
Before a decision is made about acceptance of a peculiarity or the need for therapy, parents and siblings should be heard in addition to the person concerned. Obviously, there is no need for discussion if the affected person and parents express the desire to specifically change certain behaviors and develop positive alternatives. Finally it is also about family peace and the mental health of mothers, fathers and siblings. Exclusion, social isolation, stress, depression, and anxiety are often long-term consequences of behavior challenges of the affected person but also of his or her family.
A behavior problem is defined as one which:
endangers the physical and mental health of the affected individual.
severely restricts those affected or their environment and
stands in the way of their successful participation in education, work and life in the community (Bernard-Opitz, 2018).
It is imperative to first figure out what the involved parties envision as short- and long-term goals. If waving hands, giggling or tucking in T-Shirts does not lead to any short- or long-term disadvantage, there is no need for action. However, if opportunities for acceptance, friendship, work, or even the chance of a long-term relationship are limited by "unexpected" behaviors, addressing the problem should be considered (Garcia-Winner, 2022).
Autism specific Behavior Therapy (ABT) is positive as it focusses on the goals of the client and his immediate environment. It addresses the functions of the behavior challenge and possible changes in the individual as well as its environment. Behavior therapists are aware of individual strengths and deficits and their impact on developmental chances. Behavior as well as environmental changes can open doors for the individual and those around. Individuals on all levels of the autism spectrum, their families and their network deserve a life without major restrictions.
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