My name is Muniba Khan, I am the Talent Acquisition Team Leader and a carer for my seven-year-old son, who was diagnosed with autism at age four.
If you are someone who was like me, unaware of neurodiversity (autism, ADHD, dyslexia etc), it can be a daunting experience, not knowing what to expect and how to support the needs of a neurodivergent person/child. It was a journey where I started to familiarise myself with as much information as possible and tried various things to suit the needs of my child. Reading books and articles, and joining various groups helped me to widen my knowledge and understanding for the sake of being a better support for my son.
I found that although at times it was difficult to repeat my son's needs or explain the situation to another person, it was important to make people aware and normalise the chat around being on the spectrum and what he may need.
Speaking with people and professionals, with an influx of information coming my way, I was constantly reminded that I am the person who knows him best, therefore I am well quipped to pick and choose things that best cater to him. This was the best advice I got throughout this journey.
We got introduced to a lot of help to get us on this journey. However, dealing with multiple organisations, and keeping up with a day-to-day life can be challenging and overwhelming at times. It is important to know how much you can take in and when to take a break or stop to reboot.
Having a neurodivergent child has been a challenge but at the same time a rewarding experience. You learn to love more - unconditionally as you may or may not get a hug or a kiss back most days, or simple acknowledgement of your presence. You will celebrate each learning; to spell, read, write, make friends, which, in most cases, we may take for granted with children (looking back and comparing it to my older son).
Our focus has been to ensure that the people surrounding our son understand neurodiversity and his individual needs as much as possible. It is important that you become that champion for the neurodivergent person in your life and by helping others to understand, you feel reassured that they are in safe hands if you are not around.
Being a carer for someone on the spectrum has been life changing. It makes me think of things far in advance as to what could be the effects and repercussions of anything we plan, do or say. That makes us more reflective as many a times you are unsure what may have caused a certain reaction, and we go back in time following each step to identify what lead to any unease and disruption in behaviour.
If we are fortunate enough to plan a holiday as a family, we think of where we are going, what food will be available, clothing to wear (as in most days living in Scotland, he may insist on wearing a jacket even if it's hot) etc. Each night he will ask to go back home, and you cannot make them understand we are miles away. This leads to relying on medication to make him calmer and fall asleep each night, while we drive around as this happens.
The changes to the longer days or longer nights are an added challenge. If it is bright outside, and it might be 10pm, he will simply refuse to sleep as its not 'nighttime' and if its 4pm and its dark already, it is bedtime, and he would want to go straight to bed.
The noise, sounds, sensory can also be a trigger. In our case, as my son is growing, we will not be able to take him into a mall, as it's a confined space that echoes and its overwhelming for him to be inside. We adapt and try to plan everything outdoors, even on days when it's pouring outside.
You learn to accept that it is not easy for our child to make friends, but to keep trying to ensure they have some social activities to expose them to the normalities of life. It is also important to know where to push and where to draw the line to keep a balance as you do not want them to be under undue pressure.
There is a popular quote you may have come across, “when you meet one person with Autism, you've met one person with Autism" that highlights how Autism is very diverse and each individual can be different from another person on the spectrum of autism.
Working at Edinburgh Napier University has supported my journey tremendously. I was able to get the 'understanding' for my needs as a carer, and the support with the People Team and others who work here approaching me with profound sincerity. I have experienced so much kindness where when you walk in the door and the people around know that you have made it to work after a distressful episode first thing in the morning and need time to gather yourself; they give you not only the understanding but support and not as much as a stare to suggest why were you late.
I also get the flexibility on the days I need it, to ensure that I am not only looking after my son, but also myself, and not overcompensating for the flexibility I am given (Yes! The guilt comes in so many ways). However, this flexibility motivates me to go above and beyond and extend flexibility when required of me.
The reminder of the support of the people around you is priceless and at Edinburgh Napier University, I have seen in action of them being inclusive.