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The average age of diagnosis depends on where, when, and how you ask

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While autism can be diagnosed reliably by 2 years of age, some people with autism don’t receive a formal diagnosis until much later.  Why not?  Racial and ethnic disparities as well as access to care issues are known factors.  This week, data from Denmark suggested that the diagnostic criteria has played a large role in prevalence in people with autism since 1980.  Many people who have autism may have been missed until they were older.  It suggests that older prevalence estimates were missing a proportion of autistic adolescents and adults.  Take away access and diagnostic barriers to a diagnosis, some kids followed from months of age in the baby siblings research consortium don’t receive a diagnosis at age 2, but do at age 5.  They always had autism, but their symptoms were sub-threshold for a formal diagnosis until age 5.

 

https://www.ncbi.nlm.nih.gov/pubmed/30398592 

https://www.ncbi.nlm.nih.gov/pubmed/30392626

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What is the real prevalence of ASD?

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Unfortunately this podcast does not really provide an answer, but does highlight data published over the holidays which shows in another dataset, that the prevalence of autism seems to be leveling out, rather than continue to increase as it has done for the past several decades.  It isn’t the final word and clearly there may be exceptions, but now two national datasets have shown no further increase in autism prevalence in the last few years of looking.  Is it 1:68 as reported in one study or 1:39 in another?  Is it somewhere in between?  Still to early to say, but white boys seem to be the most likely to get a diagnosis no matter where you look.  Also, folic acid proves to show an effect on the probability of not just an autism diagnosis, but autism symptoms.  This is especially important for women taking anti epileptic medications for seizures and bipolar depression.  Welcome to 2018!

Here are links to the articles.  Some of them are open access!

https://www.ncbi.nlm.nih.gov/pubmed/29297068

https://www.cdc.gov/nchs/data/databriefs/db291.pdf

https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2667432

https://www.ncbi.nlm.nih.gov/pubmed/29279889

 

 

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Autism symptoms in girls with anorexia

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This week summarizes some new studies looking at autism traits and autism diagnosis in girls with anorexia nervosa.  While the two disorders may seem different on the outset, they do share some behavioral features.  Unfortunately, most studies look at autism in those with anorexia, not the other way around.  However, what is known is that there is not only higher levels of ASD traits in girls with anorexia, about 10% of girls with anorexia also have an autism diagnosis.  This number can only be trusted if you look at both standardized observation instruments AND parental report.  Studies determining the rates of eating disorders in autism are desperately needed for better treatment of symptoms.

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Autism and Epilepsy – a brain tissue perspective

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On October 14th, the Autism BrainNet hosted it’s first webinar around how brain tissue findings affect people with autism.  First, Shafali Jeste, MD, from UCLA explained what seizures were, how prevalent they were in people with autism, and what the risk factors for them were in ASD.  Next, David Menassa from Oxford University described recent findings in brain tissue which showed how glia cells, or the cells of the brain that support neurons, are affected in ASD and how epilepsy affects these changes.  The introduction of the webinar is missing but only for a few seconds.   Thank you to Drs. Jeste and Menassa for participating in such a great informational event and for everyone that registered.

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Having autism is challenging, but being a minority with autism is extra challenging

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The recent prevalence numbers for autism were stable from 2014 at 1 in 68. However, a disparity in prevalence still exists for those of hispanic or african-american backgrounds. While these groups are under diagnosed, little research has focused on what it is like to have autism and also be from one of these races today. Gazi Azad and colleagues studied friendships during adolescence in people with autism across different racial backgrounds and what they found will sadden you. Also, what goes into that 1 in 68 number? As it turns out premature births accounts for a significant portion. And if you didn’t have a premature birth and still had a child with autism? Remember it accounts for a chunk, not the whole thing.

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What does autism awareness mean for the one in sixty eight?

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In honor of world autism awareness day, this podcast is dedicated to the new prevalence numbers of 8 year old children with autism. Is this a trend that it is no longer on the rise? Given that people with autism need awareness, support, understanding, help and boatloads of help getting them, this is a good time to know where those numbers came from. There is more that needs to be done, especially for those that are not caucasian and need better access to services.12_253402_FranklinLeah_ADDM Conditions Map_Update2014

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Moving the needle towards earlier diagnosis of autism spectrum disorders

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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.

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Someone please determine the real prevalence of autism.

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Media coverage of the new CDC study focused on the new study which used a telephone survey for another prevalence estimate of autism.  This one closer to 2% or 1 in 45.  The study is far from perfect, but it does beg the question:  what is the REAL number?  How many people with autism are there?  The answer is too many, and all those people need help of some kind. You can read the full article here: NHSR87.   Second, a summary of a presentation by David Mandell of University of Pennsylvania who explains what needs to happen to get those great interventions developed in the clinic to the community school systems, where they are needed.