Explaining Autism in Uganda

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OK guys I need you help here. In August I'm going to Uganda to help set up a special needs programme for a little boy with autism who is in an orphanage.There is very little support and understanding of any kind of difference, and without anyone to advocate for them, the children in orphanages are the ones who will suffer the most.

I'm hoping to explain Autism - what it means, in an accessible way to those working with this child and just wondered if any of you had ideas/messages/reflections of childhood that I could help share.

What did you want most as a child?
What were the most difficult things about life?
What helped the most?
What helped the least?
what did you want people to know?

Any thoughts/reflections to share would be fantastic and if I can communicate this in the right way, could be potentially life changing for our little man and others like him in Uganda.

Thanks a lot

Hello AukidsMag,

I don't have any advice for you about how to help an autistic child and the people in charge of him/her in Uganda but be very carefull for yourself when you go there: there are terrorists who are threatening and very dangerous at the time being in that precise area of Africa.

I don't know if you understand French language but I still give you a link to a governemetal site that can help you before and during your travel there.
Maybe you can use google translation to help?


http://www.diplomatie.gouv.fr/fr/conseils-aux-voyageurs_909/pays_12191/ouganda_12331/index.html

Er I Dont know if i will be helpful but Ill answer the questions anyway

What did you want most as a child? : As A child I wanted to be able to talk about my special interests as much as possible,
What were the most difficult things about life?: other people, Dealing with other people usualy causes alot of difficulty
What helped the most?: When I went into Secondry school i was given the right to leave the class and go sit by myself whenever I liked, this helped alot since it means i could calm down without going through a meltdown and it removed any anxiety that was being caused by other people in the class
What helped the least?: When teacher's and other people try to explain Autism to other children, Im sure you wont do this but one of my teachers in primary tried to do a talk on my condition, without my prior knowledge. It was a bit patronising (the teacher was doing it in a patronising manner) and the kids dident really understand it and only got jelous of me (Since i got help in class and they did not)
What did you want people to know?: As a child I wanted people to know I was smart, or atleast not stupid. I knew alot about my special interest (for most of my childhood that was birds) but I was not able to tell anyone without the other person somehow trying to stop me from speaking

You could tell them that, Autistic people usualy do not have that much interest in socialising, and so if he does not show any signs of wanting to socialise then it is no reason to panic. Its also important to tell them that if he does not react to other children, there isent an reason to try and make him react to other children. If he wants to react to other children then he will.

I dont know if this helps but good luck on your trip to Uganda anyway

What did you want most as a child?
Stuffed animals, ice cream, and to go on a magical adventure.

What were the most difficult things about life?
The world wasn't always fair, other kids were mean, and there was no justice for these things.

What helped the most?
Going to a special school, because I made friends and I got to relax.

What helped the least?
When my mom let me have too much ice cream and I got chubby.

what did you want people to know?
I didn't think about that.

(I'm sorry, I feel like these are lousy answers..;; )

thanks for your concern. I am aware of the recent terrorists attacks in Kampala and will be keeping myself as safe as possible!!

thanks for your concern. I am aware of the recent terrorists attacks in Kampala and will be keeping myself as safe as possible!!

(I'm sorry, I feel like these are lousy answers..;; )[/quote]

Thank you for your responses - don't ever think that your responses aren't valuable especially when asked for your opinions.

Voice of realism: give up. There's no bloody way in hell that you could raise autism awareness in Uganda or anywhere else in the 3rd world for that matter. You said it yourself:

Their society is easily over a century behind the western world. Imagine the hardship women, minorities and any people with any sort of a difference were under in early to mid 19th century America or Europe? That's what you'll find over there.

Your own morals may compel you to do this and you might get something of your own out of this in the end. The goal of raising awareness though is a losing battle. Keep that in mind and don't go crazy when you realize that no one there gives a crap.

I would just like to start by stating that autism presents itself differently in every individual, and therefore, the boy you plan on helping may be nothing like any of the people who are answering your questions. What I would do (if you haven't already planned on doing so) is try to remember many of the answers received, and then, after meeting the boy, try to find out what his personality is like and if he would probably want what Person A answered or what Person C answered. This seems to be kind of hard for me to find the words that I need to describe what I'm trying to say; I apologize if the past paragraph made no sense whatsoever.

But, onto the questions...

What did you want most as a child?
When I was a child, I wanted to be able to talk about my special interest (which was the Presidents of the United States, and JFK was my favorite). Not sure if the child you want to help is capable of speech.

What were the most difficult things about life?
Other kids are/were pretty difficult to deal with when I was younger (and today). I also have trouble with getting homework done, and it's pretty stressful for me. Also, sensory problems. My sense of hearing and touch are both extremely sensitive, and this has been giving me trouble in school.

What helped the most?
Finding people who are willing to listen to my lectures and rants is always exhilarating. Also, during school, 10- or 15-minute breaks from class give me some time to get away from all of the noise in the classroom and calm down.

What helped the least?
Teachers who have no openness to Asperger's/autism (and therefore basically refuse to understand people with it). Also, having to be around a lot of people at school stresses me out.

what did you want people to know?
That even though I look 'normal' in appearance, and sound normal, and score above average on the Intelligence Quotient Tests... that I still need help with things most people my age don't.

I'd also like to thank you, AukidsMag, for asking people who actually have autism to help you with trying to understand an autistic kid, instead of asking some 'professional', who is actually Neurotypical, and asks other NTs for help with autistic people.

You're awesome for even trying this! We have our hands full in developed countries and you're trying to raise awareness in Uganda?!

You deserve to have a party thrown for you.

Maybe try explaining how he's unlikely to be really good at social skills, but he could become an expert on some topic or other. Maybe try mentioning famous people. Einstein, if he appears lower-functioning; Jefferson, if he fits the bright Aspie stereotype.

When I was a kid, I wanted adventure. Getting yelled at by my mother sucked. Being ignored helped. Being treated like an NT (in "good" ways-- like trying to be nice when I'm upset-- as well as "bad" ways-- like getting angry at me for what wasn't willful) certainly didn't help. I want people to know that it's a continuum, and that if it were never present to any degree in anyone, we would be in a sad state right now (and the converse-- if it were present as severely as possible in everyone, we would also be in a sad state right now).

Dilbert - yes I do see your cynicism but surely even just talking openly about differences and mentioning autism will help them to view things more positively or less negatively?

I know it's a huge challenge but I'm not giving up! Us NTs have special interests too and mine is Autism and I can talk obsessively without getting bored about it for as long as I need to!!

thanks for everyone who has contributed. I love this website as to me it's autism from the inside out and really helps me to understand the kids/adults I work with who perhaps have more obvious difficulties and challenges to a lot of people who comment on here.

I'll report back when I return in September......

Bon voyage!

I lived in East Africa during my childhood and I imagine that there is very little recognition of differences or disabilities that are not physical. In personal injury law, people sometimes use the analogy of visible (blood) injuries versus invisible (emotional / psychiatric) injuries using a quote from Shylock in The Merchant of Venice (Act 3 Scene 1): "If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge? If we are like you in the rest, we will resemble you in that." If you can not see autism, it does not exist - so any awareness of how to recognise autistic traits helps.

There is so little literature on autism amongst African populations (I count just 24 papers for "autism prevalence Africa" on PubMed) and there is still the belief that autism “appears to be an illness of Western Civilization, and appears in countries of high technology, where the nuclear family dominates.” (Sanua VD. Is infantile autism a universal phenomenon? An open question. Int J Soc Psychiatry. 1984 Autumn;30(3):163-77.)

If autism occurred at a rate of 1 in 500 then there would be 64,000 autistic people in Uganda's population of 32 million. (And the 1/500 is a very low rate by current Western prevalence).

Going back to the first point, recognising autism equates to helping people with autism. Knowing how someone behaves, why they behave in that way and what actions help them is very positive. (For instance, you do not necessarily need to shout at or talk slowly to an autistic child who does not appear to have understood something you said, and trying to distract an autistic child who is in a tantrum will probably make it worse).

And recognising autism helps everybody, not just the autistic person. Understanding autism helps the immediate family, neighbours, police / authority, teachers in their interactions.

Your questions are very hard. I remember childhood as being very lonely, but also wanting desperately to be left alone - like I had too little of the type of interaction with people that I wanted, and too much of the type of interaction I did not want. I would have liked people to know that I was not dangerous, and that I had feelings (even if I was bad at showing them).

If I were in this situation, I would just say something like, "His brain is wired differently, so some things are more difficult for him, such as socialization and communicating, but many with Autism are actually quite smart, and he probably has some special interests that he knows everything about. His brain was just made differently, so some thing are harder for him, and a few things are easier."