The Sluggish Pace of Autism Response by the Feds

August 17, 2020

IACC Releases Autism Strategic Plan Update 10 Months Late

Top Federal Autism Committee Hasn’t Met for Over a Year

On August 11, the Office of Autism Research Coordination (OARC) of the National Institute of Mental Health announced the release of its 2018-2019 Update to the IACC Strategic Plan For Autism Spectrum Disorder. The Interagency Autism Coordinating Committee, or IACC, is the primary advisory body designated by Congress to address activities related to autism by the Federal Government. It was reauthorized and funded under the Autism CARES Act passed in 2019 and is charged with drafting and updating the autism strategic plan each year.

The 2018-2019 Strategic Plan contains valuable updates to the previous Strategic Plan of 2016-2017, including the need to double the research budget, treat co-occurring mental and physical health conditions, and address racial disparities and housing options. Unfortunately, the updated Plan is almost a year late in being released. The previous plan for 2016-2017 had a publication date of October 2017, while the new report is only now coming out in August 2020, representing a 10 month delay. Strategic Plans are meant to guide future planning and resource allocation, so a delay means the Government has been directionless in prioritizing its autism activities for 2020.

Adding to the sluggishness of the Federal response to autism, the IACC itself has not convened since July of last year, even though it is Congressionally mandated to meet at least twice a year. Historically, it has met quarterly.

With the Autism CARES reauthorization in 2019, new committee members were supposed to be named to the IACC in 2020. Although OARC solicited nominations months ago, the new membership has not been announced. Thus, no formal committee exists to convene.

Autism advocate Lisa Weiderlight wrote to the OARC, which manages the operations of the IACC, to ask why the committee had not met in 2020. The OARC replied, in a July 23, 2020 email:

The selection process for the IACC is ongoing. As you may know, the COVID-19 pandemic has impacted some government operations. Once the committee is appointed, it will be publicly announced and meetings will resume, most likely through a virtual format.

Given that the 2016-2017 Strategic Plan was issued in October 2017 and the COVID-19 pandemic shutdowns only began in March 2020 in this country, the pandemic cannot explain the delay in the Strategic Plan, as the report should have been issued in October 2019.

The pandemic has also not prevented business affairs from continuing which can be done remotely via the internet. Vetting and onboarding new committee members and meeting virtually would fall within this category.

Rather it seems that autism is not an urgent priority at the NIH.

The July 23 reply to Ms.Wiederlight from the OARC further states:

As this process has been ongoing, all federal agencies have continued to coordinate their efforts around autism and to carry out their missions to support people with autism and disabilities. In addition, most agencies have supported some special funding, initiatives, or programming to address issues related to COVID-19, some of which also address disabilities. For more information on some of these efforts, you may visit the IACC Coronavirus Resources Page.

The link provided only gives one resource specific to autism, from Dr. Joshua Gordon, NIMH director. The letter is 4 months old (April 14, 2020) and lists what non-governmental non-profits are doing for COVID, not the Federal Government. And if all individual Federal agencies are continuing on without the assistance of the IACC, then the question arises, what beneficial role does the IACC and the OARC play in advancing autism activities by the government? Congress authorized over $1 million each year to support these two entities. Many autism families struggling under COVID could think of worthy causes for the funds.

Since the previous IACC Strategic Plan came out, autism prevalence has risen from 1 in 59 to 1 in 54, racial disparities in autism have become more evident and autism families are suffering disproportionately from the COVID shutdowns of schools and adult programs. Autism doesn’t sleep, but apparently the IACC does.

The autism community desperately needs a Federal leadership entity which has the capacity to get things done with urgency.

The concluding paragraph of the 2018-2019 Strategic Plan makes this aspirational statement:

The IACC continues to coordinate federal agency efforts on autism in partnership with the public stakeholder community and reaffirms its commitment to our core values: responding with urgency to the needs and challenges presented by ASD, pursuing excellence in research, building a spirit of collaboration, remaining focused on the needs of the community, developing strategic partnerships, and striving for equity. In the future, the IACC will continue to work towards enhancing autism research, services, and policy in an effort to meet the most pressing needs of the autism community.

It is disappointing that these aspirations are not making it into practice in 2020.

In its closing response to Ms. Wiederlight’s email, the OARC states:

In the meantime, if you have any particular topics that you feel would be helpful to address through future activities, feel free to share those with us. Thank you for your interest in the IACC.

Sincerely,

The Office of Autism Research Coordination

Those interested in contacting the IACC and OARC can email them at NIMH IACC Public Inquiries (NIH/NIMH) – iaccpublicinquiries@mail.nih.gov

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