Could autism spectrum disorders be a risk factor for COVID-19?

 Could autism spectrum disorders be a risk factor for COVID-19?

The coronavirus SARS-CoV-2 pandemia is infecting millions of people and some studies relate conditions that might increase the risk of developing a fatal course for the disease, such as diabetes, cardiovascular diseases and obesity. In COVID-19 physiopathology, one of the main inflammation mechanisms is the “cytokine storm”, causing a pro-inflammatory state, related to cardiac and pulmonary damage. There is also a less effective role of lymphocyte B and T in the humoral immunity due to the reduction of their proliferative response. The physiopathology of ASD (Autism Spectrum Disorder) involves several modifications at the genetic and at the immune level, such as the increase of inflammatory cytokines and abnormal immune response in several levels. We hypothesize that ASD could be a risk-factor as the other conditions are.

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Primary Care Autism Screening and Later Autism Diagnosis

 Primary Care Autism Screening and Later Autism Diagnosis

OBJECTIVES: To describe the proportion of children screened by the Modified Checklist for abstract
Autism in Toddlers (M-CHAT), identify characteristics associated with screen completion, and
examine associations between autism spectrum disorder (ASD) screening and later ASD
diagnosis.

METHODS: We examined data from children attending 18- and 24-month visits between 2013
and 2016 from 20 clinics within a health care system for evidence of screening with the
M-CHAT and subsequent coding of ASD diagnosis at age .4.75 years. We interviewed
providers for information about usual methods of M-CHAT scoring and ASD referral.

RESULTS: Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD.
Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95%
confidence interval [CI]: 0.92–0.98), and family physicians were less likely to screen (APR:
0.12, 95% CI: 0.09–0.15). Compared with unscreened children, screen-positive children were
more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6–14.1) and were diagnosed
younger (38.5 vs 48.5 months, P , .001). The M-CHAT’s sensitivity for ASD diagnosis was
33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT
follow-up interview and had uneven referral patterns.

CONCLUSIONS: A majority of children were screened for ASD, but disparities exist among those
screened. Benefits for screen-positive children are improved detection and younger age of
diagnosis. Performance of the M-CHAT can be improved in real-world health care settings by
administering screens with fidelity and facilitating timely ASD evaluations for screen-positive
children. Providers should continue to monitor for signs of ASD in screen-negative children.

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How the loss of Asperger syndrome has lasting repercussions

Sandra Jones

Pro vice-chancellor of engagement, Australian Catholic University

The Expert:

Sandra Jones

Pro vice-chancellor of engagement, Australian Catholic University

In 2013, the 5^th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) — the ‘bible’ for diagnosticians in the United States and Australia — removed Asperger syndrome as a diagnosis separate from autism. In 2019, the World Health Organization followed suit, making the same change in their own diagnostic guidelines, the International Classification of Diseases.

The authors based the change on clinical grounds — noting, for example, inconsistencies in diagnoses —but it has had an impact far beyond the health professionals who are guided by these manuals. What does it mean for people who were diagnosed with Asperger syndrome before the changes were made?

For many, Asperger syndrome is more than a diagnosis. It is an identity. Many people have proudly claimed the term ‘Aspie.’  They have formed support groups, social groups, websites and social-media pages, as well as other physical and virtual spaces, to celebrate their Aspie identity.

Then, suddenly they are no longer Aspies, according to prevailing clinical wisdom. They are autistic.

For some, who saw the distinction as artificial and creating barriers between groups of people on the spectrum, it has been a welcome change. For others, however, it has been a distressing removal of their identity and, they say, potentially a new barrier to getting much-needed support.

Research has not yet definitively shown whether these changes have had an impact on autistic people’s access to supports and services, but in the meantime, scientists and people on the spectrum need to work together to ensure that concerns about access and stigma are addressed, and that the challenges and strengths of autistic people are recognized and supported.

First-person accounts:

Research on this shift in diagnostic criteria has been limited, predominantly conducted in the United States and done using secondary analyses of online discussions. So my research student and I sought to understand the impact of these changes firsthand, through 12 in-depth interviews with Australian adults who had been diagnosed with Asperger syndrome under a previous edition of the DSM¹.

We interviewed three women and nine men, aged 22 to 69 years. Six were employed; two were self-employed; one was seeking work; and one was student. Two received a disability support pension from the Australian government. Five had been diagnosed in childhood or adolescence, and seven as adults.

We analyzed our interview transcripts in the context of disability identity theory. Disability identity is a specific form of identity thought to alleviate some of the stress associated with minority-group membership and discrimination, and to provide a sense of belonging and validation²,³.

Half of our participants expressed mixed feelings about the change in diagnostic categories. The two women who were diagnosed as adults perceived ‘autism’ and ‘Asperger syndrome’ as interchangeable and were comfortable with either identity. The three young men diagnosed with Asperger syndrome in childhood felt that the change was positive. To them, the autism spectrum has always included Aspies, and the change is a recognition of the diversity of autistic people.

The sixth, a man diagnosed in adulthood, was ambivalent about the change but skeptical about the motivation. All six people were concerned, however, that the change could have an impact on access to services — for example, they questioned whether people who would have met the diagnostic criteria for Asperger syndrome but not for autism would lose valuable supports. They also felt, as did everyone interviewed, that there is more stigma attached to an autism diagnosis than to an Asperger syndrome diagnosis:

“I think that people will look at it differently, like, that person is autistic, so they’ve got certain needs … I guess it does have to stay in the DSM, but I’d like them to change the title of that and say it’s not just psychiatric disorders, because then people think it is, and it’s not.”

“Like I think, there are advantages, because it does kind of acknowledge there are different … that it is a spectrum. Very different people on the spectrum. That’s a good label. … And then there are some times where I feel like using that word, like autism, using that kind of ‘disorder,’ as much as the label is good, it’s also bad. In that it provokes a lot of negative emotions in some people.”

Diverse views:

Three of the participants, all men who were diagnosed as adults, were strongly opposed to the change. They felt their original diagnosis had brought them a sense of identity and acceptance. All three saw Asperger syndrome as a unique condition and the change as threatening their valued identity. They view Asperger syndrome as fundamentally different from autism:

“It just comes back to that stigma. Being willing to identify as … instead of saying Asperger’s, as autism spectrum disorder. A mouthful of a word, which no one understands.”

“… A lot of adults on the spectrum needed and relied on the term ‘Aspie’ from Asperger’s syndrome as an identity. And now that that’s been removed, a lot of adults are disadvantaged, because we don’t have an identity.”

The three remaining interviewees who were strongly in favor of the change identified with the broader autism community. They saw the previous separation between autism and Asperger syndrome as semantics, and the combination of diagnoses as bringing people together to share their strengths and supports:

“I think by the end of it, just having, instead of having multiple little definitions, having just one big definition, a broad range of conditions, is probably more useful than just having very specific ones, because people can be misdiagnosed or in those little pigeon holes.”

“Absolutely. It’ll become an antiquated term, to be an Aspie, whatever, it’ll become an old term. But yeah, absolutely fine with it. Doesn’t, I thought it was good when I heard it. I thought, ‘Oh, good. Because it used to be ASD and Asperger’s, and I thought no, they’re the same.”

The diversity of opinions in this small group reflects wider ongoing conversations about the changes to diagnostic manuals that have erased Asperger syndrome as a label. Pragmatic concerns around the more constrained criteria include the potential for people to miss out on a diagnosis or to be unable to access appropriate services.

Each of the DSM editions over the past six decades has included changes to the criteria and categorization of autism. Changes to diagnostic categories and ‘labels’ have a significant impact on the identity of individuals and social networks. Hopefully, whatever terminology researchers and people on the spectrum adopt in the future — whether it is consistent with or different from the actual diagnostic categories — will serve to bring us together to advocate for and support the needs of all autistic people.

 

Sandra Jones is pro vice-chancellor of engagement at Australian Catholic University in Melbourne, Australia.

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Life with an autistic child can be difficult. During a pandemic it can be grueling

 Life with an autistic child can be difficult. During a pandemic it can be grueling

By FEDA ALMALITI

MAY 15, 2020

ADOBE

The coronavirus pandemic has disrupted daily life for most people around the world. It has completely upended it for people with autism and their families.

My son Muhammed — we call him Mu — is 15 years old and severely autistic. He has few words beyond “wanee” (for “I want to eat”), hums and paces incessantly, has the academic skill of a toddler, and is prone to breaking things (we eat off paper plates and have gone through more iPads than I can count).

Like everyone else, Mu has good days and bad ones. But even on his good days, daily life can be a challenge.

The emergence and spread of Covid-19 have further complicated life for Mu. We’ve been cooped up at home since Gov. Gavin Newsom issued a shelter in place order for all Californians six weeks ago.

That means Mu went from going to school every day to being stuck at home. While many of his classmates continue their schooling via Zoom calls, there’s no way to meet Mu’s educational needs that way: Kids with autism often need highly trained special education teachers and one-on-one attention.

Autistic children thrive on routines and strongly dislike uncertainty and restrictions. The changes wrought by the coronavirus pandemic are clearly affecting Mu’s behavior, and I can see him grow increasingly aggressive and stubborn.

His applied behavioral analysis, a form of therapy that works on skill-building and managing behaviors, has also been scuttled. Here’s an example of how this therapy helps: Although toothbrushing seems like a simple, intuitive process to most, there are actually more than 40 individual steps to get from start to finish. Many children with severe autism, including Mu, must learn and master each step before they acquire the skill.

Before the pandemic, we received in-home weekly help from a trained professional to monitor Mu’s progress. This has been halted indefinitely, and trying to do it via telehealth is a grossly inadequate substitute for Mu. I am certain that my son, and thousands of other autistic children across the country, will regress because of the changes wrought by Covid-19.

All of this is made even more complicated by the fact that Mu does not understand the reason for these changes.

For a time, we were able to stay active and get fresh air by taking walks. That ended when Californians were required to wear masks when they were out in public: Mu refuses to wear a mask. It’s also almost impossible to get him to wash his hands for 20 seconds.

The most heartbreaking part of this is that Mu’s limited ability to communicate means it is difficult to address his needs. His augmentative and alternative communication device, basically an iPad with an app that lets him press audio-linked picture icons, makes a huge difference, but it only goes so far. I’ve begun noticing that Mu seems to be having problems with his vision, but he can’t put into words what is wrong and we aren’t able to see a doctor. I am terrified of what might be happening, but there’s nothing we can do about it for the time being.

Autism comes in many different forms, so my family’s experience by no means applies to all families, but it does illustrate how aspects of life that are already a struggle are magnified at this time.

Years ago, a University of Wisconsin-Madison study showed that autism mothers experience levels of stress comparable to those of combat soldiers — and that’s without a global pandemic.

I fully recognize that this pandemic is unprecedented in our lifetime, affecting all areas of life. Multitudes are working diligently to minimize its spread, heal those who are infected, find treatments and vaccines, and provide for our basic needs. At the same time, people like my son need accommodations that go further than what we’ve seen.

In the United Kingdom, the National Health Service says it’s OK to leave your home once a day to exercise, while those with autism can leave up to three times. That gives families valuable flexibility in addressing a disorder that can take so many different forms. In the U.S., grocery stores, pharmacies, and other stores have implemented “senior hours” to accommodate some of the most vulnerable members of society. It would be most helpful if similar exceptions could be made in public spaces for those with an autism spectrum disorder or other intellectual disabilities.

In the same way, caretakers and therapists who work with autistic individuals need to be seen as essential workers. Their interventions have been life-changing for Mu and so many others; going without them for a prolonged period will harm their chances in life.

As it has in the past, the autism community is rallying to support families like mine. Organizations like the Autism Science Foundation are working to compile resources and redirect funding to those who need it most.

I hear talk of a “new normal” but can’t think that far ahead. Like so many other autism mothers, fathers, and siblings — new data from the Centers for Disease Control and Prevention show that autism now affects 1 in 54 U.S. children — I’m focused on finding ways to get Mu and our family through each day.

What would help us now is an understanding that “essential” also means addressing the health, safety, behavioral, and educational needs of autistic children and others with disabilities.

Feda Almaliti is the vice president of the National Council on Severe Autism, vice president of Autism Society San Francisco Bay Area, and the mother of three sons, one of whom has severe autism.

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