Children with Autism Become Adults with Autism

I have sent the below letter to IACC. I am hopeful the committee will address many of these issues for all autism families.

Dear IACC Chair and Members, 

My name is Idil Abdull, I am a Somali Autism Mom and a previous member at IACC. First, I want to thank you all for what you have done and continue to do for children and adults with autism and their families. I especially want to thank Dr. Susan Daniels whom I respect and admire more than I can express. I am grateful that the current US. HHS Secretary has appointed arguably the most diverse public members to IACC. I hope the fruits of your labor are fruitful to all autistic individuals and families.

I write to you today to raise awareness when children with autism become adults with autism. As you know the support, resources, and services for adults with autism are almost non-existence. While it is essential to have early interventions with the hope that children who receive early intervention need fewer services and support; there must be equal support and services for adults with autism. As you are aware autism has increased per the latest ADDM numbers.

I would like to suggest the following friendly suggestions or at least raise awareness. 

1. Expanding research for adults with autism and their needs such as housing, employment, and higher education.
2. Recommending more research for medications that can help adults and maybe even children with autism with their challenges and symptoms.
3. CMS to help states with ensuring home and environmental safety measures are good with concrete federal guidelines that must be followed to ensure the safety and well-being of adults with autism.
4. Asking the U.S Dept of Education to pressure Congress to fully fund special education.
5. Asking or at least adding IACC’s recommendations that IDEA’s suspension rules are amended; currently, children with disabilities are suspended similar to students without disabilities. Autism is a behavior disorder and we can not allow our children to be suspended for their behaviors as that is part of their disability. There must a provision in the IDEA law that ensures parents and the IEP team can state in the child’s education plan if he/she understands the code of conduct and suspension. In other words, if the student is profoundly autistic and does not comprehend cause/effect then kicking that student out of school is not helpful, and it must be notated in his/her IEP.
6. Having diverse autism individuals participate in all autism research by adding it as a requirement in the grant/funding application process.
7. More research recommendations and funding for non-verbal autism as these individuals have higher needs.
8. Asking HRSA to ensure the LEND programs attract, keep, and nurture minority fellows into the autism field of speech, ABA, OT, social workers, researchers, etc.
9. Addressing the pandemic and autism so that families, educators, and others have some guidance from the IACC and federal agencies in this committee. This includes vaccine equity and making the vaccines available to all autism communities, particularly communities of color.
10. Autism group homes – as parents age, some of our children will need to live in a group home. What and how can IACC assist states with this.

I thank you much for your time and for addressing the above issues, and I look forward to your solutions.

The above words do not reflect any candidate, agency, or committee.

Idil – Somali Autism Mom