Alright – so, IACC is the Federal Interagency Coordinating Committee where all things autism at the federal level go through. There are public members and members from government agencies that have anything to do with autism. I was lucky enough to have been a member in this committee during the last cycle and was appointed by previous U.S Department of Health and Human Services – Kathleen Sebelius.
What I liked about this committee was that even though there were so many diverse and different voices which sometimes resulted heated conversations – folks never took it personally. I remember there would be stark differences between members from both the federal government and public members but at the end of the meeting, they would share a cab back to the airport or have lunch and not even discuss any meeting topics. Everyone came to do their job in their role and spoke for whoever they represented. That was simply amazing.
One of my favorite part was public comments. This is when anyone from the public would make oral comments or send written comments to the committee. Often there were autism parents who would travel from various states to make their case, speak their mind, speak for their children and tell us what they thought of us and what IACC was doing or not doing. This was often emotional as many parents spoke about their children’s challenges and their own fears. Dr. Insel who was the chair of The National Institute of Mental Health (NIMH) was also the chair of IACC. There will never be another person like him. Sadly he left NIMH and IACC. Dr. Insel never took anything the parents said personally, he always listened with an empathetic ear and sympathetic mind. He gave everyone an equal chance to speak. Often there were the same parents who lived close to Washington DC that would come, and he did not mind that nor did anyone else. Whatever decision IACC made was voted publicly and discussed openly.
I can understand not every autism parent or family member can come or afford to speak in this meeting which is why parents who lived close came often and that was OK. My first time at IACC, I was also a parent who spoke during the public comment time and after I spoke – Dr. Insel asked the committee what they were going to do about autism and the Somali community. This was truly an amazing moment as we all now know given how much work has been done about autism and Somali children. Yes, I know we still have a lot to do but the point is parents spoke candidly and openly without being told they could only speak once. I recently read a blog about one of my favorite autism moms – Katie Wright, daughter of Autism Speaks founders and a blogger for Age of Autism. At first, I thought maybe this was just a mistake then I looked into it and sure enough it is true. IACC only wants to hear from each parent once a year. Seriously. Autism does not happen once a year – it is 24 hours a day, 7 days a week and 365 days a year and we can only speak one time in the whole year. Come on now IACC? You can’t be serious.
Autism parents cannot and shall not be silenced by IACC or anyone for that matter. If we don’t speak for our children who will? I am extremely disappointed in this decision and quite frankly surprised. IACC is governed and funded with federal public funds. As such, public comments from parents should be important and validated even if it is the same message from the same parents. IACC members – please take a look at this horrible decision and reverse it. As members – you must understand parents are frustrated and tired. We are not looking to be liked or be friends with any IACC member. We are simply looking for real research that answers our autism questions and concerns. You don’t have to like what we are saying or even agree with it but you do have to listen to it and respect it. As an autism mom and a previous member of this committee, I am deeply hurt and disappointed in this decision and respectfully ask that this one time per year per person policy is removed.
IACC’s public comment states:
|A limited number of slots for oral comment are available, and in order to ensure that as many different individuals are able to present throughout the year as possible, any given individual only will be permitted to present oral comments once per calendar year (2018).
Imagine if I was only allowed to speak about autism and Somali children once per year, imagine if parents who kept telling IACC about the connection between autism and GI or immune issues only spoke once per year – just imagine how slow these issues would’ve come to light. Please let the public speak their mind and tell you what is happening in their lives. That is the very least IACC members can do – listen and respect different views of autism.
I just sent below written public comment to NIMH & IACC Chair and Members.
Dear Mr. Chair and Members:
Please let autism parents and the public speak as many times as they can or possible and do not limit them to once per year. As autism parents, we have to repeat our message for others to hear us, it is the least we can do. Please do not silence us. Autism has already silenced so many of our children and I don’t think IACC should silence or limit any parent’s ability to speak for their child.
Thanks much in advance and I hope you reconsider this horrible decision.
Above words do not represent any committee, agency or candidate.
Idil – Autism Mom