I like to describe myself as a voice of hope and advocacy to those who have experienced those issues which most often are deemed too sensitive or emotional to talk about. Since what one gives a voice to has the power of changing one’s life.
Most parents especially from the BAME community rarely talk about their autistic children, what motivated you to become an autism advocate? At first it used to be very difficult just letting friends and family know that my son has a disability and worst of it being a disability that cannot be easily seen, like autism. When parents have a child with a disability they also go through the stages of grief and loss.
They grieve the child they thought they would have. This happens because most mothers, when pregnant do not expect anything to go wrong with their baby after delivery. All parents have anticipations, aspirations, dreams and wishes for their children.
All parents are excited and full of expectations, to hear their child’s first words, see them achieve their milestones at appropriate time. Unfortunately, sometimes, our expectations fail us especially when your child has been given a diagnosis for autism or any other disability, be it visible or invisible.
So I went through all these stages of denial, anger, bargaining, depression and before acceptance.
Also, one goes through shame, blame from individuals be they friends , family or just people we see on the streets or in the community. Individuals or other children look at your child and they laugh, bully and intimidate him. At some point, I used to get very angry with people walking away from my son, even at events, people will not sit at the same table with us. Other children will describe him as mad.
This used to hurt me quite a lot and at times we ended up just staying at home which could have let to isolation in the long run. As the years went by, I discovered this was taking a toll on all of us. I started working on my mindset by acknowledging the fact that individuals have the right to think or behave the way they wish.
It was down to me to react to whatever they said or not. I therefore, told myself that I was going to treat anyone who says anything negative about any autistic individual as ignorant and needing some form of awareness or education.
Also, if as parents, we understand, love and accept our children with autism, others will do same. And if we don’t explain or tell our autism journey , they will never know. I therefore decided to train as an autism ambassador and advocate.
So I started with raising awareness through talks at small gatherings. It was at this point that I discovered that once one shares their story, they feel liberated and give their child a voice. I also did a postgraduate degree in autism and Asperger all in the quest to improve my knowledge in autism.
As a parent with an autistic child, here are some of the challenges you have faced or are still facing:
- Lack of proper understanding about autism and the autistic individual’s
- Lack of proper support for my son and the entire family
- Individuals not wanting to understand or help autistic individuals
- Difficulties having proper speech and language therapy for my child
- Lack of proper care/attention at the hospital.
Dr Anna Kennedy and I first met at Autism Expo two years ago where I was looking for more information on autism and looking at strategies to work with my son. Here are the details of the interview:
You took your son to Cameroon for holidays some years back, what was your experience? How did people treat him?
Then my family was completely new to autism and it was their first time meeting my son. Some were afraid, some were angry, some were just indifferent. So it was a mixture of different feelings from individuals.
But one of the things which I discovered which hurt me so much was the fact that I was treated like a complete stranger by my family. There were individuals who will completely ignore my son and never said a word to him or just to ask how he was doing under the assumption that since he doesn’t speak and therefore does not understand. I went home ready to teach and educate people especially my family about autism.
So before we left the UK, we had communicated with the speech and language therapist from school and she had helped us laminate postcards on autism, we had PECS for the whole journey and information on autism to distribute to people on the plane.
There were some instances where people will stop us along the streets to give us pastors’ phone numbers to pray for our son to be healed. There was an instance in a travel bus where a lady told me not to allow my child to my go out of the bus when it stops for security checks because according to the lady, my son was ill. Unfortunately, some people still see autism as an illness).
Younger children were fascinated by my son’s stimmings, flapping, vocalisations. Some were amazed with the fact the he doesn’t talk but is very good in the use of technology. The most disturbing part of the experience was the stares, whispers behind ones back, laughter and even insults. But as a parent, of an autistic child, I have developed thick skin, and deliberate blindness to such behaviours.
As a parent I found it difficult and embarrassing when my child demonstrated unusual behaviours in public which I had to start explaining to some people like:
- Inappropriate touching or invading other people’s space
- Flapping hands or spinning around
- Being fascinated with a particular item
- Extreme displays of affection or the opposite.
What advice can you give parents with autistic children?
The most important advice is a quote which I share with all parents :
- ‘Parents, don’t think that there’s a different, better child hiding behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child.’ – Claire Scovell LaZebnik, author of Growing Up on the Spectrum.
- Understand and do further studies about autism
- Be the voice of your child
- Make sure you attend all meetings involving your child and if possible take another person with you.
- Ask questions in case you do not understand and seek a second opinion.
- Join a community of special needs parents.
- Always make notes for future purposes.
- Share your child’s story with those who matter and those who wish to learn. You may be inspiring and helping someone heal
- Love,understand and accept your children the way they are.
- As a parent, whatever you do, don’t give up on your children. Keep battling alongside them.
- They need our help with patience, guidance and love.
- Laugh as often as possible
How do you think people can best support parents with autistic children?
- Involve both parents and their children in community activities
- Please always check on parents. Most parents of autism are quietly battling the devastating effects of depression.
- Parents take breaks and ask friends or family members to help babysit
A lot of awareness is still needed maybe not as much as before but awareness is still vital. Autism is not a word to be feared but a child to be loved.
Editor’s note: This article was published originally in Anna Kennedy Online.
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