#ABA, #privilege and #autism in #Africa

#ABA and #privilege: Let us discuss…? Shazzy T.

Honestly, the reason why I do not wade into the discussion of "what is the best way to manage #autism" because I hate to break it to the autism community, but you cannot have this discussion without discussing #privilege.

I understand that in the echo chamber of LinkedIn, it is extremely easy to imagine that the choice is between #ABA and being traumatised by #ABA. This is because the vast majority of us who even have the #privilege to be adequately #educated, and have access to global networks like this were the extremely lucky ones.

WE ARE NOT THE NORM. We are the exception.

Almost without exception, my #autism network consists of people who live in high-income countries, had amazing access to education and predominantly communicate in English. We cannot ignore the fact that this is not the reality for the entire world.

The reality of the situation is that autism is a disorder that disproportionately affects individuals and communities who come from much more dire circumstances than us.?

Many of you know that I was born on the #African continent. By now, many of you also know that I literally had to emigrate from the country where I lived at my own expense to pursue a diagnosis in a higher income country, because there simply were not the facilities to allow me to obtain a diagnosis in my own country.?

That is an extreme level of #privilege.

What do you think happened to the hundreds and thousands of other #Zimbabwean and #SouthAfrican children who also could not secure a diagnosis? Moreover, have you noticed that we always quote research from high-income countries? Literally, just try and find data on the prevalence of autism in African countries among native African communities.

Go ahead, I will wait.

(Let me even help:

Is the rest of the world aware that there are several countries in the world where the choice is between being tied to a chair, locked up, beaten to d*ath, or abandoned and undergoing #ABA?

For some individuals, #ABA offers them the only chance that they have to a have even the slightest hope of interacting society.... getting any #education or access to education at all. For some parents, who are surrounded by undereducated parents who judge them, particularly in societies where social cohesion is the currency of social interaction, this simply is not a choice - they are forced to desperately grab at anything that may allow them to continue to participate in society.

I am completely fine with other people campaigning against #ABA, but it hurts me that those people are always speaking from a position of extreme #privilege and seem painfully unaware.

I cannot deny underserved communities the opportunity to see me, as a comparatively successful, black woman and a doctor who was also born in #Africa, standing up and saying “#autism can also look like this”.

I completely understand why individuals in high-income countries feel that boycotting entire organisations because of #ABA is important.

I do not have that same #privilege if I expect to help the autistic families and autistic children who look like me who are growing up on the same continent as I grew up on. I would love to hear what my community thinks about this, and how we plan to reach out to those who do not even have access to these types of platforms.

Further reading:

https://www.independent.co.uk/news/long_reads/autism-children-africa-hidden-diagnosis-autistic-mental-disability-a8106106.html

Update: Shazzy T. also provided more Africa-specific links on the topic that highlight the extent of the issue and that I would like to share here:

"In Mali, autistic children used to be hidden in their homes in both rural and urban settings. Traditional Medical Practitioners (TMPs) were the first line of ASDs diagnosis and treatment; often TMP assessments and advice was marked by misinterpretation and stigma. For example, the presence of ASDs might be blamed on the mother’s infidelity, or an affluent parent of an autistic child may be told they?sacrificed the wellbeing of their own child for their wealth. The influence of TMPs is reinforced by the absence of training in ASDs for medics in Mali. This ignorance also extends to the general population. For example, dozens of Malian families have travelled elsewhere in Africa or even Europe or the US to evaluate their child for deafness because they had no awareness that the cause of a language deficit could have been autism."

https://www.aasciences.africa/news/assessing-prevalence-and-building-awareness-autism-spectrum-disorders-asds-mali

"The distribution of child and adolescent mental health service resources across the globe remains vastly unequal, especially given the majority of youth under age 15 years living in low-income and middle-income countries. This manifests in the treatment gap of major childhood onset mental health problems not only in Nigeria, but across sub-Saharan African countries, with the gap being most pronounced for neurodevelopmental disorders. The need is urgent to balance public health priorities and to provide research funding in sub-Saharan Africa. This must be reflected in pragmatic health care planning, policy formulation, and implementation."

"Late identification of ASD is a common observation among affected children in Africa. Such finding suggests a dire need to address factors associated with late identification of ASD in Africa with a focus on more research and funding."

[Edit: it occurs to me that I need to highlight the fact that "high-income" not only refers to the GDP of the country, but is also a euphemism for the fact that there are things like social welfare, universal healthcare, universal health insurance, access to specialists, access to healthcare in general, and many other unseen factors that make it possible for those of us who are hashtag actually autistic and live in "high-income" countries so much easier. I do not think that is even fair to compare someone living in the rural United States to someone living in rural Benin, Togo, Mauritania, or Congo - even the fact that living in the United States means that you will have an exceptional grasp of English alone means that you will have access to vastly more resources, even if we put aside the infrastructure issues and lack of access to technology that would affect the latter group to a greater or lesser extent.

If I had been born in Germany, I would not have had to emigrate halfway across the world to have access to an autism specialist who could diagnose me as an adult. It would not have been easy, but it would have been an option.?

I had to leave my family, my friends, and everything I know to come to a completely different country where everyone spoke a completely different language and where I knew nobody. The only reason that this was an option for me was because I am English-speaking (easier to learn German), I am a medical doctor (so I am highly qualified and welcome in any country in the world), and I had money (because I had qualified as a doctor).

That is simply not an option for most people in South Africa, but South Africa is still decades ahead of countries like Togo or Benin, or even the remote parts of Congo... I cannot imagine children being born in those countries even having the option to do what I did simply because they did not have the privilege that I had.

That is why I mention the fact that the country is a high-income - I came from a high-income family but, I still had to bear the cost of emigration to get a diagnosis.]