"Nothing about us, without us."

June 5, 2024

“Nothing about us, without us.”

ASAN’s message was the perfect way to set the tone for the ICDL conference. It is a great reminder to all professionals attending the conference to always center the community in which we serve. I applaud ICDL for centering ASAN and Julia as the opening keynote speaker, knowing that she would not shy away from the shortcomings, blind spots, and failings of common interventions – even developmental approaches. We need to listen to the autistic community even—especially—when the message is not fully aligned with our practice.

Being called out is uncomfortable, and the natural response is defensiveness. At the beginning of my career, I made mistakes. I wrote goals for “Whole Body Listening” and I participated in social skills “training.” Too often I wrote goals to fit a child to the world, instead of focusing on increasing their agency and ability to self-advocate. Acknowledging I unintentionally worked toward goals that may have caused distress or been to the detriment of my clients is, of course, very uncomfortable. After all, we join a care-centered field to help, and finding out you may have accomplished the opposite of what was intended is incredibly difficult to reconcile. It is hard to hear your practices may be ableist. However, when feeling defensive, I encourage you to ask yourself, is the goal to BE right or is the goal to DO what’s right?

Listening to the presentation, I was proud to be a clinical team member of Positive Development. I am most proud of our company discussion following the presentation:

  • How can we continue to improve our clinical practices to deliver ethical, respectful, meaningful services?
  • How can we continue to do and be better?

Julia touched upon the person-first vs. identity-first semantics debate in the autistic community.

This may be my bias as a speech language pathologist, but I believe being ethical in our practices begins with our language. If you are unfamiliar with this debate, check out ASAN’s webpage regarding identity-first language. Autistic self-advocates tend to prefer identity-first language (e.g., Autistic person). This preference should be reflected in all media, including website, manuals, training materials, assessment reports, parent trainings, and promotional materials. Being an ethical provider of autism services also means respecting ASAN’s position statement regarding the harmfulness of functioning labels. When discussing an individual, we need to continue to focus on individual differences in areas of strength and areas of need. These simple language differences speak volumes.

Being an ethical provider of autism services also means respecting and promoting the neurodiversity movement. As a neurodivergent-SLP (ADHD) I have felt at home since joining Positive Development. In past positions, my neurodivergence was something I was encouraged to hide or apologize for. What a change when joining PD and listening to Haley Moss during our “Lunch and Learn” encouraging self-disclosure and acceptance! We must continue to strengthen our commitment to accepting and embracing neurodiversity through inclusive hiring practices and workplace accommodations.

Disability is not a dirty word.

We must also recognize autism as a disability, as Julia reminded us in her keynote presentation. Ethical practices mean promoting the social model of disability and advocating for disability rights. Disability rights support can look like signing petitions for accessible care, lobbying for individual rights and freedoms, sharing our expertise to affect policy change, and much more. Ethical providers must determine where and how disability advocacy fits into a company’s values and mission.

Julia also spoke at length about the importance of research topics and measures.

Currently, the research disproportionately focuses on preventative or curative behaviorist approaches with problematic measures. Measuring the success of a therapeutic service by changes in a client’s ADOS (Autism Diagnostic Observation Schedule) score suggests that the goal of therapy is to make the client “less” autistic. Research topics should also reflect the priorities of the autistic community, including access to communication for nonspeaking individuals, assisting individuals in addressing challenging behaviors, and support/services for individuals with intellectual disabilities and high support needs. Treatment success should never be measured by the ability to make an individual appear less autistic; research goals should always be how to best to ensure a high quality of life for all autistic children and adults, to build meaningful connections and shape futures while treating the whole child. As we at Positive Development continue to expand and serve more regions, we have an opportunity to examine our data through the lens of neurodivergent-affirming practices. And as we build a pool of data, we will continue to assess whether we are asking the right research questions, and be sure we’re using appropriate measurement tools.

There are many, many other topics in Julia’s presentation worthy of discussion and exploration, augmentative and alternative communication (AAC), autistic play styles, social skills “training,” and more.

The questions are endless, as is the need to continue to ask them.

  • How does high tech AAC fit into the developmental model?
  • How will we ensure we are not promoting a readiness model for communication?
  • While carrying out play-based therapy, how will we honor and respect autistic play styles?
  • How will we support fulfilling social lives without encouraging dangerous masking of autistic characteristics?

And when searching for the answers, we must reflexively turn to the autistic community for guidance. We must respect ASAN’s “Nothing about us without us.” And above all, we need to continue to work to stop any harmful practices.

Stopping the harm is not the end of the journey.

Autistic service providers also have a duty to provide support to undo harm already caused. This can look like:

  • providing PTSD/trauma counseling for autistic individuals and caregivers,
  • focusing on trauma-informed clinical practices,
  • hosting community events and social opportunities for formerly isolated families,
  • and advocating at a policy level for neurodivergent-affirming clinical practices to be available and accessible to all.

Positive Development’s commitment to mental health of the individual client, as well as the mental health of the family/caregivers is an indispensable component of our services.

If any of the things heard in her presentation were shocking for you as a professional, I encourage you to expand your circle.

  • Follow the hashtag #actuallyautistic
  • Join Facebook groups like “Ask Me I’m Autistic, 24-Hour Rule” and “Autism Inclusivity”
  • Support autistic self-advocates:
  • Pay them for their time and emotional labor.
  • Read their work.
  • Above all, center autistic voices.

When you enter autistic spaces, you are a guest in their house. Your role is to listen.

Read the rules of any Facebook group you join. Before giving your opinion, ask yourself if it necessary (or desired). Be an amplifier, not a microphone. For personal and practical reasons, Julia’s keynote presentation was a recording. One added benefit was getting to hear from an autistic advocate without neurotypical professionals being able to interrupt and interject. “But what if…” “I don’t think…”.

It is always a pleasure to hear Julia Bascom speak truth to power. We need to continue to listen to the community which we serve. We need to center their experiences and voices, listen, and learn. When you know better, do better. At Positive Development, we’re determined to continue to do both.

Jordan Stuhltrager, M.S. CCC-SLP

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