Survey for Autism

[NovaChels1221]

Hello all,

I have Autism myself and am writing a book surrounding autism within the BAME community (black, african, minority ethnic) and need as mch data as posisble so that analysation will be accurate by the time I go over all the responses.

There is very little research on autism within the BAME community and I would love to gather your responses as to why that may be. All responses are anonymous.

Thank you!

Here is the link:

Autistic Views From The BAME Community

This survey is aimed at those who are 16 years of age and upwards. It should take approximately 15-20 minutes to complete. After getting my official autism diagnosis at age of 16, I turned to research literature. I found helpful articles that support and validate my feelings and experiences, but...

docs.google.com

If you have any questions regarding this or the book then please do comment on the thread. Thank you.

 

[Gerontius]

@Luca here's something you might find interesting--
Speaking as a white fellow I think autism is often perceived, erroneously, as a "white" condition, esp. a white male condition. Intersectionality is real; thank you @NovaChels1221 for looking into this. The more the truth is out there, the better a chance we all have.

 

[Jordy]

@Luca here's something you might find interesting--
Speaking as a white fellow I think autism is often perceived, erroneously, as a "white" condition, esp. a white male condition. Intersectionality is real; thank you @NovaChels1221 for looking into this. The more the truth is out there, the better a chance we all have.

The stereotype is a white skinny man with glasses that neglects his physical appearance and likes math.

 

[MC1Rcat]

I think part of the reason why there is a lack of autism diagnosis in the BAME community is because of the stereotype. I do not fit the stereotype, as I am a 50 yr old mixed race female. I am currently awaiting an official diagnosis. I have been told by 3 of my recent past psychotherapists (all LCSW) that they believe I have ASD and am high masking (mainly due to social issues and a lot of sensory sensitivities. One suggested I am in burnout mode). But, in NY state I would need a PsyD or Psychiatrist to give an official diagnosis. A lot of people do not expect anyone assigned female at birth to have autism and they are not aware of the signs of autism in this group, especially if it was not identified as a child....since people look for it more in children now. But in the 1970s and 80s nobody thought girls had ASD, so my mother never had me assessed, even though her first cousin (male) has ASD 2.

I think the biggest factor in underdiagnosis (which is related to the stereotype) is a lack of access to competent healthcare providers who can diagnose autism properly. I have NY Medicaid health insurance and they will not pay for a Neuropsychological evaluation for autism (even when combined with memory and cognitive problems from the dysautonomia), no matter how many doctors request it. I looked up drs or PysD who specifically work with autism in my area, in order to get an official diagnosis that way, and there are very few in the New York City area who take my insurance. Their waiting lists are over a year long! Most places do not take any insurance if the patient is not a child, and most of these charge over a thousand dollars for appointments. This is a huge barrier to having access to doctors who can diagnose people period, especially those who are low income and/ or do not fit the stereotype. I have an appointment next week with a new psychiatrist for treatment of anxiety and depression and asked her secretary if she could evaluate me for possible ASD (without the neuropsych test), since I think that information is relevant to the treatment of my problems, and they said yes. However, I do not know how knowledgeable this dr is and if they would be able to diagnose someone who is outside of the stereotype, especially with a history of childhood trauma. I hope so.

 

[Crossbreed]

@NovaChels1221, what country are you in?
(Someone here from that country might be able to turn you on to better resources.)

I know one problem facing minorities in America is an anachronistic [1940s] view of Leo Kanner --perpetuated by autism quacks*-- that people are autistic because their mothers were cold & unloving. Consequently, poor families (of any color) who don't know any better are hesitant to consider that their child might be autistic. You cannot really hide ASD2 & 3 from the school system but the possibility of ASD1 is considered (by them) to be an unnecessary source of shame.

When people learn that autism (aside from severe co-morbids) is a difference, not a defect, they can begin to make peace with it.

*We have such in my county.

 

[Moogwizard]

@NovaChels1221

I filled out your survey.

Very good questions

 

[VictorR]

Hello.

I have a couple of thoughts regarding the survey:

* What was the rationale for not having 51-60 and 61-70 age groups? I've encountered a significant number of autistic persons in those age groups and I feel it would be better not to group them together with 71+.

* Similarly, for diagnosis, was there a particular reason for grouping all of the 2000s together? If anything, I would have considered splitting them further (e.g. 2000-2004, 2005-2009, 2010-2014, 2015-2019, 2020-) given that the majority of formal diagnoses have been in the past decade.

For the rest of the community -

BAME (Black, Asian, Minority Ethnic) was a term primarily used in the UK, roughly similar to the US/Canadian term BIPOC (Black, Indigenous, People of Color)

https://equalities.blog.gov.uk/2022/04/07/why-we-no-longer-use-the-term-bame-in-government/