'It means everything': Somali community creates word for autism

The Somali language has a new word to describe autism thanks to the efforts of a group of Minnesota medical professionals, people with autism, and parents.

One of those parents is Anisa Hagi-Mohamed, an artist and advocate from St. Cloud who has two children with autism. She joined host Tom Crann to talk about how this came about and why it's needed.

Hear the full conversation by using the audio player above or reading the transcript below. It has been lightly edited for clarity and length.

So a word for autism or a phrase didn't really exist in the Somali language. Why is that?

The reason for that is, back home in Somalia, there isn't a diagnosis for autism. There's not an actual term for it. So it was more traits of autism being described. And those traits were linked to other things like having an introverted personality, or being antisocial, or just not being able to — being nonverbal, nonspeaking.

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How have Somalis here in the US have talked about autism previous to this process to come up with a term?

I do think that in our community, there's a lot of fear. There's a lot of anxiety for us as people who came from another country, coming from civil war. There's just natural fear that comes with hospitals and authority figures and everything else. So naturally, there are some discussions about autism that lean more towards the fear-based side.

And then there are other discussions happening with medical professionals and parents who are on this journey, and have been, that are more positive, like, what are the strengths of our autistic children? What can we do instead of just sitting in that, 'oh, my child is autistic', and then that's it, you know?

So tell me about the term you and others have come up with here for us and what is its literal meaning?

The term that we coined — I'm gonna give credit to Dr. Hussein Awjama [who] came up with this term in 2020 — is maangaar.

It breaks up into maan, which is mind, and gaar, which is unique. A unique mind, which I think is a perfect fit.

Tell me were there any other terms considered in this process?

Yes, there was another term: maangooni, which is, maan, mind, gooni, separate. Back in Somalia, someone who's called 'gooni' is someone who is very introverted, not very social. So, if there was someone who was a little bit withdrawn from society, they would be called gooni.

And so we thought, given that background, it kind of is leaning more towards the negative side and that's why we went towards maangaar, which is a more of a celebration.

What does it mean to have this word now?

In our community, anything related to mental health, anything related to any taboo topics, it just carries such a negative stigma.

And as a parent, I feel like my child is autistic, that's not something I'm going to be ashamed about. I think that having this positive term, it will encourage other parents who are facing maybe that fear, that anxiety of going out and having their autistic child integrated into the community. I think it'll be an easier process for them so it means a lot.

It'll be a support system that's being created that hasn't existed before because I think everything starts with language. My background is actually linguistics and so this means so much to me as a parent, as a teacher. I think it means everything.

As a linguist, how do you plan to get this term used more broadly? What's the process to get it accepted by other parents like yourself and the medical community?

We've already received such an incredible response, like all over Facebook. I have actually personally sent it to my child's case manager and to her teachers.

But in terms of future steps, we are working on that —creating a more united effort, maybe doing speaking engagements, maybe meeting with representatives from hospitals and from medical organizations to hopefully make this the mainstream term.