MY JOURNEY AND LIVED EXPERIENCE AS AN OLDER AUTISTIC  ADULT

My autism diagnosis and my family’s reaction to it [read more]

I was diagnosed autistic on the 13^th of March 1985 initially at the time, it was known as moderate to severe mental retardation with signs of autism.  The reaction to my autism diagnosis was met with mixed reactions from my parents whereby one parent was accepting it and educated themselves and also attended autism related events whereas the other parent until now has not accepted it and is also in denial alongside with my younger siblings. 

How was the awareness of autism in the 80s and 90s?

During the 80s and 90s, little was known about what autism at the time due to lack of knowledge and awareness hence leading to high levels of stigma, discrimination, abuse and deaths of autistics. Still in those days, a lot of autistics were locked up in horrific structures, tethered to trees or metal gates by their family members. Most cases we here autistic women with higher support needs facing gender based violence from those who were entrusted to their care.

How I coped with the mixed reaction from people in pertaining to my autism diagnosis

It was rather a bumpy ride for me in terms of my coping mechanisms in relation to my autism because the people that you relate with are either with you or against you notably those whom you’ve known and grown up with. Sometimes I do mask when I’m around people who don’t understand my autistic traits and therefore they become very judgemental and abusive and controlling. Still now it’s more difficult to cope as an autistic adult due to the fact you’re brought up in a rather cruel and judgmental world where people are either ignorant or abusive and that has had huge negative effects on my mental health especially among autistic adults which has been widely been misunderstood for far too long. For most people who don’t understand autism especially in my case, they’ll impose their cultural and religious beliefs on the autistic person while inflicting physical and emotional abuse toward them.

How my school life was in the 80s and 90s.

My school life was a rollercoaster due to the bullying and abuse I received in the mainstream schools that I attended, due to my autism. No understanding or reasonable accommodation were provided to me throughout my education as a result of that. No mechanisms were put in place ensure that inclusive education was mandatory plus I struggled to make friends during my school days however my saving grace was the inclusive school that was very accommodative and helped me in my journey and as a result, I was able to graduate with a high school diploma. My college education was also the same just like in school but however I was lucky enough to join the Strathmore University Project Autism Tech training where I met and interacted with fellow autistic adults and other neurodivergent people like me and we connected well to be honest. I was among the second cohort of students who graduated with a certificate.

My advocacy journey as an autistic adult.

My advocacy journey began after I discovered that I was autistic after going through my medical records. Not long before that I had to use the internet to learn the ropes of advocacy from other autistic people who went through the same experienced the same thing like I did. The level of advocacy has so far reached beyond my expectations as a result of being part of fellowship training programs and the many events that I had attended that helped in boosting my journey.

What were some the things that I have achieved thus far as a result of my advocacy?

Being employed as a consultant at Ubongo TV, winning the best inclusive influencer award with InAble Africa, International disability alliance Bridge Kenya CRPD-SDG training, Certified disability inclusion facilitator plus I was able to travel outside of Kenya for the first time

Has my family supported my advocacy journey and what is my advice to parents to autistic children undertaking this journey?

Yes, and no. reason being is that they’ll always have something to say about and the results are mixed. The only person who supported that was my first parent(deceased) and was eager to help me jump start an NGO and psychosocial support group for autistic adults in Kenya which is now very active now.

My humble advice to parents of autistic children who are starting this journey or are in this journey is to have a very good supportive system that will lift you up, that will lend a shoulder for you to cry on and will motivate you to do this not only for yourselves but for the benefit of your children’s live. Do not let anyone with a toxic agenda bring you down or allow yourselves to be misused by those who claim to support your course but have other ideas that will wreck your advocacy. Have supportive friends and family members that are understanding towards your neurodivergent child and who are willing to be educated on your child’s disability[/read]