The greatest, little pleasures

Strange as it may sound as down as both of us often get, worrying about the future…. It is Aysha’s autism that brings us the greatest joy

Little achievements, tiny little things like asking to go on a fairground ride for the first time aged 16 and then wanting to go on another has reduced me to tears of joy. I still look back and remember our annual trips to winter wonderland, Aysha stuck to my arm like glue. Me asking her gently if we should try one of the gentle rides and seeing her face etched with the pain of anxiety and frustration. I would reassure her and we’d carry on circling around the theme park aimlessly 

It was 2 winters ago that I asked the same question and she replied “maybe” I actually thought I heard incorrectly. My Aysha who has impaired visual perception, can’t balance and is scared of sudden movement. I looked at her smiling shyly at the the intimidating ride in front of us and actually thought I was going to burst out crying

Rehan and I had a quick squabble about who was going to take her and decided he would be better off holding my handbag and taking photos 

Aysha stayed calm on the ride while I screamed for Britain. Half screaming for fear of my life, half out of the sheer joy of knowing Aysha had done it, something she had wanted to do for so many years but felt unable to

We then ran across to another ride and then another…. She did it!

And nothing on this planet could have made us happier 

what is normal?

We all want what is normal: a home that shelters us from the elements, a partner who is strong when we are weak, a child who meets all their milestones and succeeds at all they do

What happens when you don’t get what you want….. You cry, you pretend you are no longer comparing and after sometime you change your definition of what is “normal”

Aysha may not be neuro typical and never will be but that doesn’t mean she doesn’t have a great deal to contribute to society. Her thinking is pure, simplistic and unadulterated by societal norms

She believes that thieves are a consequence of the injustices in society and aren’t always bad people, she believes in sharing and giving. She doesn’t believe in holding on to possessions that she doesn’t need if somebody else is able to make better use of them, people’s unhappiness upsets her because she isn’t able to communicate well enough to make them smile again, she believes that drug addicts and alcoholics should be treated with kindness because it was probably mental health issues that led to their addiction in the first place and her compassion for the homeless is unrivalled

They say people with autism have no empathy, Aysha had to be taught empathy, she had to be taught how to walk in the shoes of those less fortunate and in time it was something she lapped up. Autistic people have to be taught a lot of things that others take for granted but taught in the right way, with visuals and in context there is nothing they can’t excel at

If people with autism were given a fair chance we wouldn’t have a society where 85% of people on the spectrum are out of full time employment. This is a shocking statistic and one that can be changed if people were more aware and more tolerant x

Report time

Came home from work to find a rather exhausted looking Aysha yesterday. Lots of hugs, desperate for comfort and reassurance I immediately wondered if she was unwell or just overworked, she’s literally been working on her assignments all evening and every weekend without a break, sleeping late and then spending every spare second revising for a maths exam that she is expected to fail dismally in. I looked over towards the stairs and saw her college report on the stairs…. Though her form tutor has praised her perseverance and desire to succeed, her maths teacher’s comment is casually littered with the words disappointing, unsatisfactory and the all familiar “needs to try harder”

After a quick scan through of the report and telling her how proud I was of her, we settled on the sofa for a major comforting session

How long will it take for the teaching profession to be trained to understand how demoralising these words are to a child who wants nothing more than to pass and has spent every waking hour working towards that dream? A year of revising, redoing past papers and private tuition, followed by a result 2 whole grades lower than the previous year…… Where is the justice in telling her that she needs to work harder?

Trust your instinct

How did Aysha spend 16 years of her life undiagnosed?

Aysha sat up late, walked late, learned to read late and still finds many motor skills challenging. At around 5 years of age she was diagnosed as dyspraxic 

We blamed dyspraxia for everything. We had no answers for her anxiety and realised that she had learning difficulties but the word autism never actually crossed our minds

Girls are notoriously good at masking their symptoms of autism. As a toddler Aysha would hum loudly to block out the overwhelming sounds and sights of everyday life. She was terrified of birds, scared of unfamiliar people, disliked open spaces and couldn’t cope where there were crowds of people 

As she grew older she masked these symptoms, she stopped her loud hum and learned to cope with being overwhelmed. She learned to look at people while they spoke to her, she even started replying to people albeit in one word answers. She soon adopted a host of “social norms” that got her through everyday life

“She’s shy, she’ll grow out of it, she’ll soon catch up” said the comforting, well meaning voices around us

When Aysha turned 16 and after years of being told by school that there was nothing wrong with our child and that I shouldn’t compare her to her high achieving sibling, we decided that a private assessment  by an educational psychologist wouldn’t go amiss 

The educational psychologist was horrified that her symptoms hadn’t been picked up by teachers and made an urgent referral to mental health services

I remember back to when the referral was made, not being able to say the words mental health. I had always thought I was open minded and never believed in the stigma surrounding mental health issues, but now that my  own daughter needed a mental health assessment not only could I not bear to share this, I couldn’t even get the words out of my mouth

15 minutes into the appointment with the senior clinical psychologist at the mental health hospital she turned to Aysha and said “Aysha do you know much about autism? I think you might be autistic”

Aysha and I looked at each other in complete horror, I felt my heart break into a million pieces for my child and more selfishly for all the dreams I held for her future

“The diagnostic process will really only be a formality, I’m pretty sure Aysha is displaying all the signs of autism needed to make an informal diagnosis now” she continued

It took time to digest the information, we had only just been hit by the difficulties listed in the educational psychologist’s report and now this 

We prayed with every breath we took that the formal diagnostic would prove otherwise, that it wasn’t really autism

How would she cope? How would we cope? What would people say? What did I do wrong? Why didn’t I take folic acid when expecting her? Why did I vaccinate her? How did I allow 16 years to pass without her being diagnosed? Was I really the worst mother in the world? Would I be able to face anybody ever again after failing at parenthood so badly?

I won’t even attempt to describe what we went through 

The formal diagnostics were carried out and autism became part of our lives. We stopped telling Aysha to “grow up” we stopped telling her to act appropriately to her age, we stopped demanding that she made conversation with people and in the process I wasn’t sure I’d survive the guilt 

But here we are a year on doing what we can to right the 16 years of wrong, to support her the best we can and to try our level best to understand and meet her needs

We may have been 16 years late and unable turn back the hands of time but maybe we can spread awareness to ensure nobody else goes through what our Aysha suffered and to encourage parents to listen to their inner voice…. Nobody is an expert in your child, except you, trust your instinct 

Acceptance

Autism doesn’t go away, it’s a lifelong condition that like some illnesses has good days and bad days

Part of Aysha’s cerebellum doesn’t work properly which means that her entire learning process is different from that of her neuro typical (non autistic) counterparts 

For her to learn something she often has to forget something else 

Aysha has been in mainstream education for 15 years now, to have days when you forget how to subtract is both humiliating and frustrating 

Unfortunately mainstream education doesn’t cater to those who learn differently. If you don’t pass your maths and English gcse you have to keep going until you do. Aysha is hurtling towards her third attempt this summer

Aysha takes it in her stride, soldiers on and feels no resentment towards the education system or towards what it is that makes her fail her exams. I on the other hand am a mere mortal I do curse the system that has failed my child and rips her self esteem to shreds and though I love her with every beat of my heart cannot embrace a condition that makes her suffer this way

I think back to the days when her diagnosis was confirmed, my grief was so severe I would walk out of the house not knowing where I was going or even why I had left the house. I would go shopping and forget what I had come to buy and couldn’t even recall the journey

I actually did feel as if somebody had ripped my heart out. Rehan too was grieving, we went through a cycle of denial, anger and resentment, attempts to ignore it and eventually resigned to acceptance 

We even went through every family member on both sides of the clan looking for clues as to where the autism came from. Poured over memories of our own childhoods, our weaknesses our lack of abilities, my lack of OLevel passes, his lack of fluency when writing, we concluded that there are no answers, we were simply chosen to be blessed with a child who is different but in no way less 

Today we accept that our beautiful daughter won’t and can’t do the things other 17 and 18 year olds around her are doing 

She won’t be moving out to go to university, she doesn’t have a Saturday job and she doesn’t beg and plead to stay out with friend

Most painful is the fact that she is so aware that she is different 

Yet we do believe that one day in her own time and with the right support she will become independent enough to stand on her own two feet and fulfil her dream of going to uni 

For this though she does need acceptance and equal opportunities which is why autism awareness is crucial 

Autism

My aim is to spread the word about autism to those who wish to listen in order to get to a stage of acceptance and one day maybe some sort of equality

It’s hard to accept that autism is associated with lesser. Despite what the law and what people may say, at the moment there is no equality at all. From the ages of 14 to 16 Aysha has volunteered in Oxfam at weekends and run an online charity workshop, making and selling scented melts with all proceeds going to charity

At 16 however, Aysha wanted a paid weekend job. She took her CV to every shop in Kingston town centre, twice over….. She not only didn’t get called for an interview but wasn’t acknowledgement either and it wasn’t for lack of experience but because her CV mentions she has a learning disability

Nobody asked what the disability was, or how it could be supported in the workplace

Like every person, Aysha too deserves to lead a fulfilling life, to earn a living and reach her full potential, maybe once there is awareness we may reach a point of anything close to equal opportunities, making the world a more inclusive place for autistic people of all ages and abilities

Two and a half years on

This time last year I was praying with all my might that the diagnosis wouldn’t be autism. Though her difficulties stared us in the face we couldn’t bear the thought of her being autistic
When the diagnosis was made we felt that our world had crashed around us, that our happiness had been cruelly snatched away and that everything had changed
Along the way I met beautiful people who guided me, consoled me, allowed me to grieve and most importantly understood without judging
Today I embrace being blessed with a truly amazing child who approaching womanhood reminds me daily of what I should never take for granted, a young woman who loves like her life depends on it, who struggles on a daily basis with a beaming smile on her face, who keeps me human and warm, who knows not what hate is….. a beautiful human being who couldn’t change even if she tried or even if she wanted, but who’s differences should be embraced unconditionally
Thank you to those who have helped us on our life changing journey and supported us emotionally when we thought we had forgotten how to smile and guided us through the thick and thin of acceptance, denial and every emotion in between