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ASPartOfMe
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25 Jun 2021, 8:24 am

Racial Disparities in the Diagnosis of Autism Spectrum Disorder

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There are significant racial inequities existing in access to services for youth with autism spectrum disorder (ASD). Multiracial children are diagnosed with ASD later than their White counterparts, report difficulty accessing treatment services, and ultimately experience worse health outcomes.1

We spoke with Doris Lebischak, MD, a child and adolescent psychiatrist with over 37 years of experience, about this important and vital issue

Why do racial disparities exist in the diagnosis of autism spectrum disorder, or ASD
Structural racism, in its many forms, affects access to health care. It is also in the health care industry. For example, structural racism affects income and education. Income and education are directly associated with one’s access and proper use of health care, as it acts as a cascade effect and a pervasive disease.

What must providers and families consider so they don’t reinforce or perpetuate systemic racism in the diagnosis of ASD?
Providers and families together need to acknowledge it is present. It has lived in all cultures and has never been eradicated during any time in history. It’s a disease within our country that has to be managed by all of us.

For example, the disparity delays the identification of individuals with the diagnosis of autism. Providers need to be aware of the disparity and be more vigilant. Families need to know they may be at increased risk and take steps to care for their health. I recommend keeping appointments, following recommendations, and working with providers or seeking someone you can work with to determine the right path forward. Asking questions or seeking information if you feel misunderstood is critical.

How can the system work together to close these gaps and destigmatize disparities when it comes to ASD?
Structural racism significantly adds to the stress of the individual. It can account for 30% of one’s overall stress.2 In a family with a child who has been diagnosed with ASD, the disparities and the level of stress can have a tremendous effect on the parents and potentially the larger family unit. There is high risk for behavioral health disorders and chronic disease.

Health care providers need to evaluate and monitor family members who may be at this increased risk. Families need to educate themselves and seek care when their functioning is impaired.

The health care industry is acclimating to AI (artificial intelligence). The work we put into monitoring disparities of all races, religions, and classes in our industry will be multiplied as we move toward this explosion. I see AI as “the hope” of monitoring and eradicating racism in health care.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

It is Autism Acceptance Month

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


cyberdad
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27 Jun 2021, 4:53 am

It should be noted that prejudices and stigma carried in the general population against certain races is "shockingly" also present in health professionals.

Plenty of evidence that doctors, mental health professionals will take varying interest in clients based on their racial background. Sometimes this may be due to lack of experience in dealing with people of different cultures.



Mountain Goat
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27 Jun 2021, 8:46 am

One aspect is that autism diagnosis will be different for people living in different culteral backgrounds. For example, if one is living in a predominantly white culture and one is black, or one is living in a predominantly black culture and one is white, one naturally will be standing out as living different lifestyles and will have different ways in how one lives even if ones family has lived there for a few generations.
The result of this is that if a child who comes from the traditional background is autistic, and comes across as being different, they are more likely to notice it. If a child who is culturally different is autistic, they may not think of autism because they are thinking the child is different through culteral reasons.

It is also interesting that an autism assessor would struggle to assess people if they are flown half way across the world to another culture that may speak the same language, but the culteral differences make the assessor struggle to tell what ways are part of the culture and what ways are related to autism, and it can take decades of time to learn these culteral differences... So if an assessor relocates, they have to rely on local people working with them who know the cultural ways to be able to assess efficiently. (I heard this from a professor who had gone right around the world assessing people as part of his studies, and he had to rely on local assessors to work with him due to the culteral differences. His study actually concluded that right around the world the percentages of people on the spectrum are roughly the same).

But cultural differences and ways do give an extra complication when it comes to assessing people for autism.

Another similar difference is one that I personally found, is that I have a different background then most who live in my area, because my parents were/are different. This means that my autism traits (Bear in mind that I am waiting to be assessed) that I have found out I have were assumed by me and others to be due to my different way of life and so the different way of live was camaflaging the autistic traits... And I had also been forced to learn how to mask to fit in from an early age, and it is only when oes life starts to fall apart when one hits more serious conditions associated with not being diagnosed that one starts to desperately looks for answers in a last attempt to try and survive.

Yes. Cultural differences certainly do make a difference, but I would not go as far as calling it discrimination, as to discriminate means a purposful attempt has been made to discriminate rather than there being an issue that has been brought to light that needs to be looked at that many were not aware needed to be addressed. (Discrimination is a different thing as to discriminate means one has to make a purposfully informed decision to exclude some to favour others).


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