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Beyond Autism Awareness: What's Next?

Overview

This recording is from a webinar hosted by ASERT, the Philadelphia Autism Project, and the Policy Impact Project to discuss the challenges and opportunities that exist beyond mere awareness of autism. Panel discussion included autistic self-advocates, family members, and policy makers throughout the state.

Below are a few audience questions that the panelists didn’t have time to answer, but wanted to address. These are their responses:

Panelist Questions

What should an autistic person do about self-disclosure during job interviews or the work place?

Tamara Garfield: I think this really depends on the person and/or the context. I think it may be important to disclose particularly if accommodations would be needed for the interview or job. For some, it may be helpful to draft a disclosure letter because you can outline both strengths and support needs really clearly without having to worry about verbally explaining everything in the moment. Research suggests disclosure can be really positive for many autistic people. However, some autistic people report experiencing discrimination and lack of support in response to disclosure. My experience has been very mixed and I understand why many autistic people do not feel comfortable disclosing. It would be great to create workplace cultures that really value and support neurodiversity to address this!

As a big sister to an autistic teen at home, I am interested in getting more involved with supporting the autistic community. What are some community initiatives that I can volunteer with?

Tamara Garfield: I would look to autistic advocacy organizations like ASAN for ways to support the autistic community through advocacy and volunteering. They issue action alerts about issues impacting the autistic community and you can volunteer to help call representatives on behalf of people who find phone calls inaccessible. I think it would be great to work with existing programs in the community for teens and young adults to make them more inclusive for neurodivergent youth.

How can we as a community help increase supports and resources for those who are not diagnosed with Autism until they are in their 30s or later?

Tamara Garfield: I think very little is known about this population unfortunately and we really need more research to answer this question. Anecdotally, it seems like many late-diagnosed autistic people want similar things in terms of reducing stigma, increasing awareness of diversity within the autism spectrum, and making society more accessible and inclusive for autistic people.

Do you think it is important to focus on the fact that autism does not look the same for everyone when speaking about stigma and awareness?

Tamara Garfield: I definitely think that this is important to continue to emphasize. I think many autistic people who do not fit stereotypes have been less likely to receive an autism diagnosis because it is still seen as something experienced mostly by young males. It’s terrible that many autistic people (including me) worry about educators, employers, physicians or therapists potentially having these kinds of limited understandings of autistic people. When people who do not fit the stereotypes about autistic people disclose in those contexts, people often respond by questioning whether we are autistic instead of listening to and supporting us. People also tend to infantilize us and have really limiting assumptions about the competence or autonomy of autistic people, particularly those of us with learning and communication differences. I just saw a great talk by Abha Basargekar that was hosted by CAPTAP (Community Against Prejudice Towards Autistic People) on this topic. I wish more people could see autistic adults with learning and communications differences living, working, connecting with others, and exercising self-determination in their communities. With the right policies and support, so much is possible but society tends to only focus on challenges and negative aspects of autism so I think people really struggle to move past that. I think it’s important to recognize this diversity within the spectrum to reduce stereotyping which can contribute to limiting, dehumanizing views of autistic people in society more broadly.

I really need help help bringing my stepson out of his comfort zone and creating something that works for us at home. Do you have any suggestions?

Tamara Garfield: If a person is open to it, I think it’s really beneficial to work with a counselor who can help work towards goals that are meaningful to the individual and develop effective strategies for managing anxiety or other barriers that may be associated with taking on new challenges and transitions. I think it’s important to find therapists who understand autistic people, respect our autonomy, and want to empower autistic clients to become the best version of themselves instead of pressuring them to seem more like a non-autistic person. I also think it can be really helpful, if possible, to find someone who can work with the family to figure out how to navigate and support these changes and coordinate support. I think families can benefit from support too as their children become adults and roles shift. Unfortunately, it can be really hard to find people who understand and have training related to autism and neurodiversity, cost could be another barrier.

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This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.