One in 36 and what it predicts

The CDC released data from the Autism and Developmental Disabilities Monitoring Network (ADDM) on Thursday. In the past 2 years, the prevalence of autism has increased about 20%. Why? Are there more new cases or is diagnostic practices improving? For 20 years there has been fewer Black and Hispanic kids diagnosed. Is that still the case? Listen to this week’s #ASFpodcast to hear some early thoughts, the CDC will join us for an interview on April 20th:

https://www.cdc.gov/mmwr/volumes/72/ss/ss7202a1.htm

https://www.cdc.gov/ncbddd/autism/data.html

Why developmental milestones are so telling

Thanks to Dr. Susan Kuo at Broad Research Institute and MIT, there is an analysis of 17,000 individuals with autism across 4 different studies that all looked at how developmental milestones emerged. The results show a great deal of diversity – across different studies, time, intellectual disability and genetic background. Different groups of people with autism have different experiences based on some commonalities. But all people with autism showed a delay in many milestones. They are important for understanding people with autism, changes across time in the diagnostic criteria, and their impact on later abilities.

https://jamanetwork.com/journals/jamapediatrics/article-abstract/2794306?utm_campaign=articlePDF&utm_medium=articlePDFlink&utm_source=articlePDF&utm_content=jamapediatrics.2022.2423

COVID-19 is especially deadly to the IDD community

In a study over over 64 MILLION people across the US, COVID-19 has been shown to be most deadly to those with an intellectual disability. This was once a theory, now it is a proven fact. Take action! Write your governor and demand that intellectual disability and neurodevelopment disorders be put on the priority list for vaccination in your state. A sample letter is below:

As a person or family member affected by intellectual disabilities and neurodevelopmental disorders, we ask that you include all high-risk patients and caregivers living with these conditions as a priority population in your immediate prioritization of FDA- approved COVID-19 vaccines. 

Intellectual disabilities have extensive, and often severe comorbidities. Early prevention and intervention are paramount, and this vaccine is critical for our high-risk community and public health. Families affected by IDD and NDD live daily with conditions including: cardiopulmonary dysfunction; neurological deficits; debilitating seizures; vision and/or hearing loss; gastrointestinal issues; autism spectrum disorder.  A recent publication in the New England Journal of Medicine demonstrated the high mortality of COVID 19 in people with IDD and since groups with lower risk of mortality have been listed as high priority conditions, we request that those with IDD be added immediately.  As leaders and caregivers in this community, we strongly believe individuals living with IDD who require daily hands-on care, and their caregivers should be included in the high-risk population for risk for catastrophic outcomes due to infection of COVID-19. The effects of COVID-19 could be devastating for individuals and family members, of all ages, who are constantly at high-risk for neurological and organ damage caused by potential infection. During the pandemic, these families have lost vital resources (such as physical, occupational and speech therapies) and myriad interventions otherwise afforded to them. Compounded by COVID-related delays in routine public and private care management due to risk of exposure, many people have experienced regression, and the only way to safely resume these crucial interventions is through immediate vaccination.  Beyond the direct risk of Covid-19, the pandemic has had negative effects on the ability of individuals with IDD to receive health care and daily support that they need.

We urgently call on you to prioritize all people and family members and caregivers of people with IDD and NDD to receive the COVID 19 vaccine.

https://pubmed.ncbi.nlm.nih.gov/33676088/

NEJM article open access: https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051

Lumping or splitting ASD with intellectual disability? What’s the difference?

Separating out those with ASD with an intellectual disability from those with ASD without an intellectual disability can more precisely identify factors that influence probability of having a child with ASD as well as factors which can prevent or preclude services. For example, in those without an intellectual disability, there seems to be stronger heritable component. Mothers and fathers with ASD were more likely to have a child with ASD without an ID compared to those with an ID. Also, children of immigrant parents may be missed and lack essential services if they do not have more profound identifiable symptoms like ID. For the sake of better improving research and services for everyone, is it time to stop lumping and start splitting?

https://pubmed.ncbi.nlm.nih.gov/33103358/

https://pubmed.ncbi.nlm.nih.gov/33049777/

Pandemic Problems? ASD Researchers are Listening

You have spoken, and scientists have listened, to surveys that have asked how you are doing, what your family needs, what is working and what has not worked. Telehealth gets mixed reviews, and kids are suffering from everything from anxiety to OCD. Other results of these surveys are covered in this week’s ASF podcast. Please continue to answer these requests for feedback, because the future of autism interventions, assessments and services depends on them.

https://pubmed.ncbi.nlm.nih.gov/32515992/

https://pubmed.ncbi.nlm.nih.gov/32503172/

https://pubmed.ncbi.nlm.nih.gov/32445682/

Sobering statistics on suicide

Suicidal thoughts and suicidal attempts have been shown to be increased in people with ASD.  Rates are similar to those with bipolar depression and schizophrenia, but are higher even without psychosis.  This is shocking and an urgent health issue in the autism community.    This week’s podcast summarizes recent data, publications, presentations and concerns of thought leaders in autism about rates of suicide, what the risk factors are, and where research should be directed to prevent suicide.  If you or anyone you know is thinking about ending their life, please reach out to the National Suicide Prevention Hotline :  800 273 8255.

Autism across the ages

Two studies from Sweden came out this week with the same idea: study autism across time, and focus on other things besides just autism. This podcast reviews both. The first examined quality of life in adults over the course of 20 years and the other followed preschoolers into school age. The results are consistent. That is, people with autism have high levels of psychiatric comorbidities which depended on a number of factors. Of particular importance is the role of intellectual functioning on outcome. These recent data are further evidence that while people with autism share struggles, those with ID may need to be considered differently in clinical care, housing, employment, and obviously intervention.

Moving the needle towards earlier diagnosis of autism spectrum disorders

This week, the CDC published data that showed that the average age of first developmental evaluation for concerns was lowered by 5 months.  Five months is a lot to a family whose child is suffering and in need of help.  Separately, research out of Houston shows that many families are able to skip the formal evaluation and receive intervention prior to an established diagnosis based on demonstrated need that the child needs services.  This was the good news in autism, and while there is still a lot to be done especially with regards to racial and ethnic differences, public health is moving in the right direction on this issue.  But not all people with autism view their differences as symptoms or a disability.  What can we learn from people who use sign language to communicate to inform us about the way some people with autism communicate?  A special meeting called Conversations in Autism and Sign Language (CASL) brought experts and individuals on the spectrum to discuss.