Destigmatizing autism abroad

After graduating with a master’s in Applied Behavior Analysis (ABA) from the University of Miami, Fajer Almenaie returned to Kuwait with a specific goal in mind: to replicate the Intensive Behavior Intervention Services (IBIS) clinic, where she completed most of her training, in Kuwait. Now, the 2018 graduate is providing much-needed intervention services to children and families affected by autism in her homeland while educating the public to fight the stigma surrounding the condition.

We touched base with the alumna to learn about the clinic, the misconceptions she encounters about autism, and how her time at the U gave her the tools to change attitudes back home. 

Why was it important for you to do autism work in Kuwait?

There’s such a stigma around autism in our society. In fact, the word ‘autism’ in Arabic translates to ‘isolation’ or ‘isolated.’ There is a misconception that autistic kids like being alone or that they don’t like people. Even pediatricians or neurologists are reluctant to mention the word ‘autism’. It’s still a very sensitive, stigmatized diagnosis to have.

I realized that I could make a real difference for people with autism in Kuwait by being open to the western way of thinking but also understanding the culture here. And so, I wanted to bring back the knowledge I acquired [at the U] and start educating people on what it means to be on the spectrum, the things that you can do, and the types of interventions. I want to help families learn to accept the diagnosis and to understand that it doesn’t mean isolation, so that it doesn’t feel like the end of the world for them.

How was the clinic first received in Kuwait and how did you adapt?

It was not well received at first. It took us a long time to get it off the ground. I had to do a lot of outreach, TV shows, Instagram posts, videos, workshops. I still offer to give parents consultations for free. This is all just to get them comfortable with the idea. So far, we’ve only had positive outcomes, and people started telling people and now we have a waiting list, which is amazing.

What do you tell parents that may be reluctant to bring their children in for behavioral therapy?

I tell parents that I'm in the service of treating, not diagnosing. I don't care what the label is, but let's start somewhere. And that has made them a lot more receptive. And the amazing thing about ABA is that once you commit to it, and you're able to have the parents on board, then you see the changes in the kids so fast, especially with early intervention. It’s about finding ways to just get them in the door and get them to start therapy.

I also try to educate as much as possible to remove the stigma around autism. I try to teach the different definitions, because I think there’s a lot that people don’t understand. I always give examples of people with autism that are doing great things. I hope to soften the load, to explain to them that with work, we can see improvements. It does not mean that there's a cure for it, it just means that we can learn to adapt to it and make differences that are important.  

What has been the most challenging aspect of opening the clinic?

I think [obtaining appropriate] resources is the most challenging. We have a lot of resources in English, but it’s still challenging for me to find resources that I can use for Arabic-speaking clients.

What is one common misconception about autism that you would like to dispel?

There are so many, but the one that I take really to heart is that autism automatically means learning disability. I hear a lot of parents say, “he's really smart, so it can’t be autism.” And it's not true. People with autism can be very smart, and they're very intellectual and they're gifted in their own ways. They are capable of so many things. They can have a normal job, and go to college, and get married. They just need the right type of intervention to get them there.

How was your experience at the IBIS clinic?

I remember my first client on my very first day at the clinic. The child came into the clinic and cried for two and a half to three hours. I was panicking, I didn't know what to do. I had no idea what ABA was. But my professors and supervisors did a really good job of talking me through the entire day, and just reassuring me. A couple of days went by, and the child got used to me, but he would still cry. And then one day, he came into the clinic, and he didn't cry at all. He came and held my hand and was ready to start. And for me, that was very surprising.

But I realized there was a science behind it, which made it that much more interesting and rewarding for me to be a part of.  It’s not just winging it or going out on a limb and hoping the child will stop crying eventually. I now transfer that to the therapists that I supervise here. And I always tell them, ‘You need to trust the process. It's going to be hard, but you need to trust the process’. I had a lot of moments like that in the clinic where I had to trust the process.

Also, the fact that the environment was so supportive and collaborative, and I got to see people having successes in front of me, made it that much easier to go through the hard days. That was one of the main reasons I wanted to bring the same model back to Kuwait, to support all the RBTs [Registered Behavioral Therapists]. I wanted to recreate that system and setting where you can feed off each other and pick each other up on days that might not necessarily be the best.

How does your connection to the University of Miami help in your career now?

I'm in touch with all my professors and friends, which is helpful. No matter how many clients or cases you see, there are always going to be things that you may have not come across yet. In Kuwait, there aren't really a lot of people that I can talk to that understand what it means to be a behavioral therapist, or what a BCBA [Board Certified Behavior Analyst] even does. It’s really helped me to be in touch with my professors, to hear their advice, or ask if something I’m planning to do with a client is the right course of action. And they are always welcoming and supportive. It makes me like feel like I can do this job a little bit better knowing that I have that support.

To learn more about the master’s program in Applied Behavior Analysis, click here.

Related Stories