I will never know

Navigating neurodivergence

Rachel Smith

I will Never know:

I will never fully know what impact being neurodivergent has on my life, as I have never been any other way.

Undiagnosed, yes but the neurodiversity has always been there…

Its pulses through my veins, providing me and others with a stunning constant array of intensity of emotions.

I believe I tend to feel more, think more and essentially be more than most, this can be both a blessing and a curse.

When it’s good, it’s amazing like sliding down a rainbow, hands out, fingers out reached, catching raindrops as I glide with momentum, feeling the wind in my face and appreciating every passing moment in time, absorbing it’s power and energy from within.

The beauty of being so attuned to texture and sounds means the whole world is often amplified; a simple car journey listening to a familiar and favourite song can often feel like a live one to one concert, the lyrics sitting in the mind, stroking and comforting worries, hugging the anxiety and bringing inner peace whilst simultaneously the tempo of the music can synch with the heart and provide new fresh focus, the chance to re-assess situation, gain greater and nurture the budding seeds of creative solutions.

Nothing is fixed, the future is on our hands, we control our own destiny.

Whilst others enjoy a strong sense of familiarity, and seek comfort in routine, there are those that see contentment as the enemy of progress and can’t seem to rest for too long. Many of us, urge to dominate life, not happy with letting it slip by, we are innovators and are always hunting for new opportunities to explore and develop and grow as people, physically, mentally and spiritually.

When we meet others who project the same vibe, and whose hearts’ beat with desire to connect and make a difference it’s where we feel most alive! We bounce off each other, vibrational energy is multiplied. Some of us have an innate sense of intuition and we filter through past the bland, expected, mandatory social norms and cultural expectations and seek refuge with those who aspire to live with integrity and who are unapologetically their true self. A multi faceted complex yet honest and pure soul who seeks to explore and understand the world and it’s purpose beyond the mundanity of just living. We seem to have an essential desire for deeper connection and seek others who feel similar. Whilst we may not care for small talk, we often want to skip all the expected social niceties and delve into core essence each being, feel them as energy and align ourselves with them, allow their perspective and life experiences to wash over us, like a sea wave and as the tide brings in the seaweed, like treasures from the deep, ocean, we seek to find the inner intricacies of each beautiful soul. We accept them for who they are and allow their perspective of life to embellish our life, make a mark and stamp on us forever altering who we are as person, our stories and lives forever entwined.

Sometimes this can happen almost subconsciously and instantaneously.

As humans we often under-estimate the power of our presence and the influence of the words we speak.

Sometimes something as simple a well timed hug when we need it the most, can lift us from our despair, sometimes a nasty judgemental sarcastic  comment can have the power to initiate great change as we constant seek to improve ourselves.

We seem to possess a high level of self awareness which can be a dual edge sword: where the difference between self sabotage and suffering with addiction is just a knife edge from using the intensity of our emotion to channelling the focus to self-empowerment and desire to create and become better and more than what we once was.

Such a fine balance, such life altering differences between both sides of the sword. Most of us with enough life experience have lived and been on both sides of the sword.

There is no middle ground, there’s no grey area, we tend to be all or nothing.

It’s intensity is relentless and the outcomes of trying to permanently balance on the edge can be exhausting.

Life can beat us to our knees, it can snatch away our purpose in the flash of an eye…so we have to be willing to adapt, ride the storm, recognising our achievement and celebrating our successes along the way but never taking the weather at sea for granted.

We maybe captains of our own destiny but we do not control the sea.

We can only control how we respond.

When the next storm takes us, will we seek comfort in surviving the last battle, and cling to the sails of hope and opportunity or will we allow ourselves to drown in the fear of uncertainty and doubt our strength to rise again once more.

It’s through life’s constant challenges that we grow, adapt and learn to become better.

We want to explore our grit and share with others our stories so we may learn from each other to grow stronger as community.

We may be competitive in our quest for the truth and finding a higher purpose within life but we are also often born teachers, and desire to learn from others as well as teaching and sharing our knowledge along the way.


Like the popping of bubble wrap, we tick off experiences and leave no stone unturned in our adventures: we can be impulsive and spontaneous and that may not always bode in our favour but we often have a unique sense of humour and humility to be able to laugh at our mistakes and encourage others to find the humour in failed endeavours where we have found ourselves in ridiculous and amusing and almost always unpredicted, sometimes strange scenarios.

Lack of filter from mind to mouth, can provide instant hilarious exchanges and oversharing in more professional situations can be a well needed refreshing pit stop to brighten up a more formal and dull meeting or interview.

Sometimes, there’s this overwhelming needs to point out details that others may miss, tiny, often trivial details prompt questions in minds that we cannot ignore, an urge to share with others; despite knowing it bears no relevance to current conversation, we relish random off topic  tangents: it can be as simple as spotting typos or questioning the photography angle, or finding a pattern or break in pattern in our surrounding and we want to know how and why something has occurred.

Sometimes our imagination may get the better of us, and what may seem like a simple mark on the ceiling, sparks the imagination into creating so many alternative realities as to how the mark came to be. When we allow our self to explore all options no matter how potentially far fetched and unlikely, we charge our creativity and dance in the world of fantasy, allowing the seeds of possibilities to grow roots and our soul can bounce joyfully between layers of beautiful and indulgent artistry as we create multiple mythical worlds within our own.


A battle I can not afford to lose

A Doctor / ND Mom’s heart-warming journey

When you have your first born, your life completely changes. You have been warned about it, but you can never be fully prepared. This is what it was like for me. I had a beautiful son MashAllah. It was amazing but it was also exhausting. He never slept, cried a lot and had colic. He was a smiley baby and toddler, always rushing about and extremely hyperactive. He wanted everyone to do what he was doing, but he would also fall to the floor sometimes for no apparent reason. At 2 years, he was saying just a few words. When he started nursery, he was still not saying very much. Whenever I went to pick him up, he was playing on his own quite happily while the rest of the group were singing or having circle time. I was told he will settle down and his language will come.

He then started school, but he was still not talking in full sentences. He apparently made friends, but nobody liked to play with him. He was clumsy in his play, and did not understand social rules. He would barge in, keep doing what he was doing when the teacher told him to move on and pulled other children by their clothing to get their attention.  School understood he was not malicious, maybe his hearing was poor. We did all that, the hearing test and the sight test, everything was fine. School then referred him to a speech and language therapist – there was a 2 year waiting list. By now he was six. He had started to hate school, getting him in to school was the hardest thing for me. I did not understand my son, this was the worst realisation I had and I couldn’t wait two years to find out what was wrong with him. He was assessed privately because I could afford it by the Grace of Allah. At 6 years, he had the language ability of a 3 year old. Tears rolling down my cheeks I called my mother. (It is important to note that I come from a well educated family background with my parents and siblings being high achievers). My mother said to me “Well, maybe he will make it to university”. It was like I was already bleeding and had been stabbed again with a dagger-it was painful to hear. From that day, I have never shared anything about my son with her, and the few time I did, it had been very superficial. For a lot of parents it is not that they want to hide their children’s diagnosis from their families but more so because of the anticipated lack of understanding which can prove to be even more tormenting. Even my husband couldn’t understand, he kept saying he will grow out of it and he will be fine one day, he told me to stop being paranoid and stop applying my “psychology” to our son. I’m a pragmatist, I believe in “doing something” to change your circumstances. Pursuing support alone was an undertaking responsibility but also rewarding. My son did benefit from this help, Alhamdulillah, but everything had to be done privately and discreetly – a burden in itself. I believe Allah guided me and supported me in my endeavours otherwise there were many low points where I could have easily been broken, and stayed broken. This was even before the “A” word…

My son has always struggled with his attention and had many sensory issues which are commonly seen in children on the autistic spectrum. I needed to support him with his learning throughout his early schooling. His learning progressed and his language, however, his social communication skills did not improve. He struggled to keep friendships going, if somebody talked to him- they were his “best friend”. He was an easy target for the more able children who picked on his weaknesses and bullied him.  There were times I did wonder whether he had a social communication disorder- however, I never wanted him to be labelled. For me it was more important that the environment around him is supportive so that his deficits have minimum impact on his life. When parents come to me looking for a diagnosis, I explain to them that having a diagnosis will not change the way their child needs to be managed, it is a lifelong condition and there is no cure. As parents we need to understand that these children are different and need to be parented in a different way to maximise their strengths. It is the system around these children that needs to be flexible and adapted, including family life and school life to help them reach their full potential. For some families this can be to have a family meal together or being able to get them to university/college or for them simply to be less aggressive or happier. Every child on the spectrum is different with vast differences in their learning abilities. Some children are non-verbal while others have advanced language development- all of them are special in their own way.

When my son was in primary, year 5, I had moved him to an independent school. His previous school had no understanding of his difficulties and he was left in a corner of the class quietly living in his own world. When I asked his teacher what she was doing to support him, her response was “I can’t divide myself in to 32 pieces to support each and every child in my class”.  That was of course too much to ask so I moved him.  It was a huge financial commitment and again with very little support from my husband who felt I was wasting my money. It was the first time in his new school, that his teacher noted that he “ticked all the boxes” for an Autistic spectrum disorder. There were many meetings in school and “red flags” – and eventually, reluctantly, he was given the diagnosis of a high functioning autism disorder. It didn’t come as a shock to me as I always suspected it. My son was not old enough to understand the implications of this and he still doesn’t, all he knows is that he’s different and doesn’t “fit in”.

Through the years we have struggled together with the impact of his difficulties. His learning is slow, he is easily frustrated by things that he finds hard and prefers to avoid them. I socialised with parents of children his age- but he couldn’t connect. It used to be heart breaking when he would tell me he wishes he had a friend- just one friend.  He is now a teenager in high school. He has come to terms with the fact that he doesn’t have friends, he actually prefers to be on his own as he finds conversations exhausting. He is happier; he is used to the school routine. He still hates school and will always ask if he can be home schooled from time to time. He gets on well with some teachers and does well in those subjects; in others where he doesn’t like the teachers he will do poorly. He still gets bullied at school; recently he was physically targeted by 5 of his peers. I thought he would be miserable after that, but school managed it effectively and he got closure, he moved on. He wants to be an actor/director – and I pray his goals will be achieved.

Thanks to Allah, I was pleased to see how resilient he has become in many ways.

What I have learned from my son is that every day is a struggle for him. Every time there is a social demand placed on him, he shuts off. He struggles with finding something he is good at. His main interests are Marvel superheroes- ask him anything about them and he will know. Ask him about anything else academic or sports and he is lost. He has found it hard to connect with his own sibling which he finds frustrating at times. He will say to me that his life is miserable. Looking after him and supporting him has been very challenging at times, sometimes it has been a lonely road, and other times a very rewarding one. I have kept my faith throughout and sometimes it is the only thing that keeps me going. I have learnt to let go of my expectations of him and to embrace what his expectations of me are.  I also have some great friends who I know will catch me if I fall, I am very blessed. My job also allows me to see so many children who are much more misunderstood and disabled by their condition, their parents have so much more to cope with and some with very little or no support. Their struggles are so huge- that my life seems like a walk in the park. There is very little post diagnostic support in the UK as a whole, and even the little that there is, it is being withdrawn due to lack of funds.

Whether Muslim or not, having a child with any difficulties is hard. I do feel there is more stigma in the Muslim community, possibly due to lack of understanding and ignorance, but that’s why it is our duty to step up and speak out.  I hope this article has been helpful to some; you are not alone in your struggles. May Allah give us patience in being able to deal with the throes of life. There have been times I felt like losing the will to live but these verses from the Quran have helped me:

“Indeed Allah is with the patient”
(Qur’an 2:153)


“For indeed with hardship will be ease.”
(Qur’an 94.5)

Then I roll up my sleeves once again to continue the battle, a battle I cannot afford to lose.