World Autism Awareness Day: What you need to know about the disorder

What is autism and its symptoms?

Autism Spectrum Disorder is a neurodevelopmental disorder characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication as well as by unique strengths and differences. It is known as a spectrum disorder as individuals may be high functioning or have more severe challenges than others.

How common is autism especially in Kenya?

The CDC (Centers for Disease Control and Prevention) has prevalence rates at 1 in 68 children in the US and the WHO (World Health Organization) has estimates rates at 1 in 160 children worldwide. In Kenya, no official statistics have been released, however the Autism Society of Kenya had estimated prevalence of 4% in 2007. It is important to note that the rates of autism in the world seem to be rising – this could be due to various factors such as better diagnosis, more awareness, and actual increase in prevalence as well.

When do the signs of autism start to show?

Signs of autism become prevalent when the child should be meeting social and communication milestones however fail to do so. The red flags include:

- No social smiling by 6 months

- No back and forth sharing of sounds, smiles or other facial expressions by 9 months

- No babbling by 12 months

- No interactive gesturing such as pointing, reaching or waving by 12 months

- No words by 16 months

- No meaningful 2-word phrases by 24 months

- Any loss of speech, babbling or social skills at any age.

Are there learning centers for autistic children in Kenya?

Yes. There are very few private settings that offer effective and individualized interventions for individuals with autism. There are also a handful of autism units in other government schools. Kaizora Institute is the only centre that provides evidence-based applied behavior analytical services for children with autism.  

Has the government stepped in?

There are a few schools that have autism units, however the government is still to step in by providing resources and sufficient training for these units and the teachers running them.

What about health? Is autism a well understood condition?

Autism is definitely better understood now than it was in the past. However, there is still a long way to go in understanding effective evidence-based interventions that help children with autism.

Are there medical personel and centers that manage autism?

Medical practitioners help with the diagnosis or autism and in recommendations going forward. As mentioned above, there are centres what work with individuals on the spectrum, however these are few and many lack sufficient training and resources.

What are some of the major problems that face autistic people?

There is still a large gap in awareness of autism in our community -this results in stigma for those living with the condition and their families. As people learn what autism is, parents will feel more comfortable bringing their children out without being judged. The awareness factor also affects the age of diagnosis. It is common that diagnosis happens when the child is 3-4 years old, however intervention can begin as early as 2 years old or younger.

As we bring down the age of diagnosis, intervention can begin earlier. In addition, there is no support for parents of children who have just been diagnosed. Without the support, many parents go through denial which delays intervention for the children, and they are also not always guided to what the next step after diagnosis is. As our children with autism become adults, there is not much in our country for adults with autism. Employment is a struggle and even training of skills to gain meaningful employment is barely available.

How are parents help their autistic children? What kind of support can be offered?

Over the last decade, a number of autism organizations have been established that help in connecting parents of children with autism - this community acts as a support unit for each other. Some of these include Autism Awareness Kenya, Kenya Autism Alliance, Differently Talented Society of Kenya.

What are the career opportunities for people living with autism?

There are very few organizations that provide employment for individuals with any disabilities - whether mental or physical. Few organizations are now embracing our children - Kaizora Institute sends students for internship opportunities to organizations in the community e.g. Safaricom which will lead to skill acquisition that should lead to meaningful employment.

What are the gaps in this area that need urgent attention?

Awareness, Acceptance, Inclusion. Kaizora Institute is a full-day centre working with individuals with

developmental disabilities, mainly autism. We provide individualized evidence-based services using principles of applied behaviour analysis (ABA). This intervention has the largest body of scientific literature proving it's efficacy in improving the lives of children with autism.

Interventions:

It is important to know that there are many interventions out there, but not all of them are effective - some may even be harmful to the child's health. When a person searches on the internet for effective interventions, it is important to look for peer-reviewed articles in journals. A good way to do this is to search over scholar.google.com rather than www.google.com where anyone is able to post anything. This is an important factor as interventions are always costly and parents with limited resources should know what will give them results.