Life on the Autism Spectrum Starts with Self-Advocacy

Self-Advocacy and the Autism Spectrum

I have been serving people on the spectrum for over 20 years. My work started with a small social group to help kids who were being bullied.

And, as it turns out, they all had something in common. They were all living on the spectrum and because of their differences, they were ostracized, ignored, and hurt.

As I have seen hundreds of my clients grow up over the years, I have seen a dramatic lack of support for adults on the spectrum. And in my practice, I am increasingly improving my services for adults.

Most of my adult clients have only recently found out about what the spectrum is. I have one client who was diagnosed as “mentally retarded“ and “uneducable.“

He is currently 24-years-old and has a business degree from a major university. He has also written a 100,000-word novel that I am trying to get him to publish.

Our society makes employment and living independently difficult for people on the spectrum. This is because our society is dominated by highly socially skilled individuals.

People on the spectrum are also plagued by stereotypes and considered weird. This is the beginning of my ongoing series on how to boldly live independently when your identity is the spectrum.

Start Advocating for Yourself

One of the first major steps for success is to learn to advocate for yourself. And that also means surrounding yourself with friends or other professionals such as a therapist, psychologist, or life coach.

Learning how to identify your needs and organizing your weekly routine is critical. A professional can be helpful if they are goal focused. Psychology Today is a good place to start your search.

My clients in a group setting focus specifically on organizing their weeks into blocks of 30 minute periods which can include self-care, daily responsibilities, giving back to the community, and preferred activities.

Preferred activities such as special interests are linked to nonpreferred activities. When a non-preferred activity such as chores, exercise, etc is completed, the preferred activity is the reward.

I encourage my clients to think about their weeks as almost a computer program. They are able to use the schedule to avoid getting lost in the rabbit hole of special interests.

Start Communicating Your Needs

Communication is critical. To advocate for yourself and to prepare for independence one must be able to articulate your needs. I sometimes encourage my clients to see their lives as a television or movie.

Act-out or role play the idea of communicating your needs. Regarding the aforementioned life coach or therapist, allow someone into your life who will give you the very difficult feedback you may need. This may be as simple as manners at dinner.

This again goes back to communication. Feeling comfortable in asking the question, “Is what I’m doing right now bothering you,” or “Please let me know if I offend you or say something that bothers you. I will sometimes miss those cues.”

People on the spectrum typically have trouble recognizing those subtle nonverbal cues that make-up nearly 80% of all communication.

But there is nothing stopping someone on the spectrum from actually asking in concrete terms what another person is thinking or feeling.

For example, you may be talking to someone and you noticed that they rolled their eyes or sighed. Is that about you? Is that about some other situation that is occurring in their lives? Just ask. There is no harm in asking.

Stop Using the Word “Should”

As a wrap-up to this first article about living successfully on the spectrum, I want to address the word, “should.“ The word is very powerful. Society typically dictates to people on the spectrum that they “should“ act a certain way.

They “should”’ conform to societal norms or conventional social expectations. They “should” not obsess over World War II. They “should” not engage in professional cosplay, and they “should” not talk obsessively about a particular topic.

Over the years through childhood and adolescence, the word “should” becomes ingrained in a person’s mind and their internal thoughts become “should.” The word “should” will make a person anxious and depressed due the judgemental nature of this idea.

I encourage my clients to focus less on conformity and ignoring the word. One example would be a client who says, “I should have exercised today.“ And because of that statement they feel as if they failed.

An alternative statement is, “I WILL exercise tomorrow.“ Being present and mindful about the moment is an important step in being confident and less self-judgemental.

I like to quote Yoda regarding this intellectual exercise. Yoda stated, “There is Do or Do Not. There is no try.”

Living on the spectrum is not easy. But I think it’s primarily because of our societies high emphasis on social expectations.

Finding ways to self-advocate, communicate clearly, and not beat yourself up through the world “SHOULD” are just a few beginner steps to living boldly and successfully on the spectrum. Please stay tuned for more articles related to the journey of the spectrum.

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