The benefits of neurodiverse diagnosis

Neurodiverse diagnoses have become increasingly common and neurodiversity has become more accepted and normalised as a result. However, there are still some who are reticent to seek diagnosis for their children or for themselves, because of the concern around labelling and how they may be perceived by others. I understand this, but have also discovered the benefit.

I still remember the moment my best friend from school, Lou, broached the subject of autism when we were on a trip to visit her up in Scotland.  She was a special needs teacher at the time, and as we drove to the supermarket together, she suggested that Elijah, aged 5 at the time, might  be autistic. I was a little defensive, because I felt she was in some way suggesting there was something wrong with my beautifully sensitive boy – I wasn’t into the idea of labelling him and my idea of autism was very different then to what it is today.

While I had identified that Elijah was perhaps more sensitive than others and may require a different approach to education, I didn’t at that point consider this as an indication of autism. Ewan was keen that Elijah follow the traditional education path so he endured pre-school with daily tears and fears around separation. We were told this would ease, and there were benefits in both socialising him and preparing him for school, but like me, Elijah has never been sociable and he certainly never thrived in that environment.

Still, we did what we did because it was expected of us; a conventional tick list of life, and pre-school was on there, despite the misery it may cause to the child. School was on there too, so I reluctantly signed him up at the last minute, forever hopeful that Ewan may change his mind. Needless to say the tears continued and we realised very quickly he was struggling with the lunch times particularly, finding the noise in the playground difficult and refusing to eat a packed lunch as he was accustomed to a hot meal. So we changed our working hours and started picking him up at lunchtimes.

We also realised he wasn’t coping with what was expected of him; he couldn’t easily dress himself, and he didn’t like having to wear shoes; changing for PE and swimming was tough and he was often in tears. He struggled with reading and eventually we sought private support for dyslexia when it became apparent he was suffering with this. In short he found school an anxiety-creating ordeal to the extent that I started volunteering as much as I could, to be a presence, to make him feel safer, albeit still not recognising that maybe he could be autistic.

Elijah’s relationship with school deteriorated significantly in the leap from infants to juniors; his anxiety levels become critical to the extent that he wasn’t sleeping or eating properly and there was a ritual that had to be strictly followed each morning prior to school and then the torturous drop off where he was often prised off me in tears, begging me to take him home.

It didn’t help that by then Eben, my youngest, had started in Reception and was witness to this daily ordeal. He was also then prised from me, also in tears, and I often left the playground in tears myself - by then suffering with a skin condition which highlighted my inner stress and the manner in which my heart was struggling to see my boys suffering simply to from the pressure of conforming to society’s expectation around education.

We took private advice from a local and reputable child psychologist and he proposed that Elijah may have autism and that we were essentially trying to fit a round peg into a square hole. His recommendation was to remove Elijah from school and seek a diagnosis. By then other family members were more open to the idea of both home schooling and the possibility of autism, and I have always been extremely grateful to my parents for their support not just at that time, but ever since.

At our request the school made an application to the Autism Diagnostics Service and our wait began. During that time we home schooled - or unschooled - Elijah, staying away from any formal learning and immersing him in nature to support his healing. He also received regular massage and Bowen therapy and daily Reiki too. The combination of these holistic practices made a huge difference, helping to relieve the shock and stress in Elijah’ system and ground him back in his body and to earth again.

Inevitably Eben was disgruntled about continuing in school and while his behaviour had always been difficult to manage, with noise, hyperactivity, violence and melt downs, the intensity increased - which was exhausting - and he was especially violent towards Elijah. Being a sensitive soul who does no harm by nature, Elijah never felt to retaliate and was therefore an easy target for Eben to take out his anger and frustration and was regularly being reprimanded but to no avail.

Sometime later Elijah’s assessment came through and he was officially diagnosed with autism, which was helpful to us all, Elijah especially, as it allowed him to understand himself and for us to adjust our parenting to better meet his needs. I still didn’t know a huge amount about autism then - my idea of autism was very much based on books I have read around children being non-verbal and extremely violent. Elijah was none of these things, but of course he does have quite a number of autistic traits, more so as he has aged.

He’d started running backwards and forwards across our kitchen floor since beginning school and when I commented to the teacher, she said this was his way of regulating, I just hadn’t appreciated that this is actually a form of stimming. At some point he moved this outside and it has become so normalised to us now that we don’t even notice him ‘doing his running’ but he runs a significant distance daily, barefoot, up and down our lawn, to the extent he has created his own path amongst the grass. He does it when we are out in public at times too and people do look strangely at him, but he’s happily oblivious. 

His sensitivity to noise is a classic symptom, so too his food fussiness, choosing only to eat mainly bland, brown, crunchy and crispy foods, obsessively separated on his plate, presented in a certain ways and eaten by hand, no cultlery. He is obsessed about anything crunchy, and grapes especially, so we have become an expert in grape varieties. For years this Elijah’s food choices have challenged my love of nutrition and Ayurvedic principles, as he eats things which just make the Vata part of his constitution more imbalanced. There is no hope of me getting anything like soup or mashed potato into him, which would be balancing.

Once when I led a retreat in Goa, as he didn’t like any of the Indian food, he lived for ten days on a combination of fruit and some horrible commercial and sugar-laden crunchy cereal. I was ashamed at the time, but now I laugh about it because I now understand it - this is the benefit of diagnosis.

I should note that Ayurveda very much sees neurodiversity as a Vata (air and ether) imbalance so I am conscious that there are things we can do as parents to ease this, from the foods our children eat - no raw foods, no bird foods, no crispy and crunchy foods (ha), lots of soups, stews, potatoes, creamy and warming foods - to the benefit of oil massage, warm baths, heavy blankets, massage, Reiki, being in nature and anything which helps them to ground. Some of these techniques we can implement but the food is most definitely a work in progress!

In terms of clothing, he only likes wearing certain textures and fleeces have to have a zip down the front, he hates wearing socks and opts for crocs all year around. His environment has to be a certain way. If we are watching a film on TV, all main lights have to be off, all doors closed, none of my food near him (he even hates the look of soup and humus, for example), the remote lined up on table just so. 

He gets passionate about various subjects and obsessively learns all he can about them, which means we know lots about tractors and planes, currently it is mountain biking. He loathes eye contact, is shy, turns away from people he doesn’t know, experiences social awkwardness , has always hated parties and groups, hates eating in public, won’t play with a group of children, will stand on the sideline instead, but does have a couple of close friendships, he is much better one to one, and panics if he has more than two of them together at once.

Towards the end of Year One Eben, then six, took himself out of school. He loathed school, hated that Elijah was at home with me or other family members, hated not knowing what was happening from day to day, would get upset about the prospect of swimming or PE and people watching him. He took quite radical action to ensure he didn’t have to go to school and no amount of enticing him would get him back in.

We weren’t quite sure how we would manage. His behaviour was extremely testing and I reached out for help from a private children’s Occupational Therapist who diagnosed certain sensitivity issues. It was also recommended I contact the Behavioural Clinic and Autism Guernsey. While I never quite made it to the Behavioural Clinic, Autism Guernsey kindly carried out a preliminary assessment and felt that Eben may well be autistic too.

The school felt this was unlikely as Eben presented as a model student - they sadly didn’t see the behaviour that we experienced outside the school environment. They also overlooked the connection between autism and him suffering with glue ear and  requiring speech therapy from a private Speech Therapist (and it was she who had identified the hearing issues). However the school kindly completed the various assessment forms.

In the interim, having Eben also now home schooled was indeed challenging, because none of us got a break.  It didn’t help that he was resistant to most things, hated any of the home school small group activities, had to be closely watched on play dates for signs of impulsive violence due to excitement, resisted seeing a dyslexia teacher, as he is also dyslexic, and loathed anything which involved him being watched – this was a constant source of frustration because of his natural ability with a ball, but he was determined never to go to a sporting club.

We took advice from the local child psychologist again who suspected ADHD based on Eben’s premature delivery (34 weeks), which significantly increases the risk of developing AHDH due to impact on brain development, leading to attention and control difficulties. This wasn’t helped by the trauma of those early weeks and I found it helpful reading Gabor Mate’s book Scattered Minds: The Origins and Healing of Attention Deficit Disorder, on the link between trauma and ADHD.

I visited our doctor and while Eben was referred to CAMS, the fact he wasn’t in school and CAMS couldn’t speak to teachers about his behaviour, meant they rejected the application. I felt at a loss and realised we were going to have to keep addressing this privately. I engaged the help of a recommended homeopath in the UK with experience of neurodiversity in children, to support both boys and I shall be forever indebted to her for the difference she has made to us all.

Of course there are many reasons for it, but the stress and challenges we faced with the boys undoubtably played a role in the breakdown of Ewan and my romantic relationship during all this, but we were determined to continue co-habiting and co-parenting, and somehow move our lives into a more stable and peaceful way of being. Our working life had been shifting since Elijah started school and required lunch time pick-ups and had continued to adjust around home schooling. We worked together as a team with the unwavering support of my parents and Ewan’s mum.

The wait for Eben’s assessment was a long one. During that time Lou sent me a book called Strong Female Character by Fern Brady, which I can highly recommend. She was hopeful that I might start recognising my own autistic traits. However I was blinded to these and she literally had to spell it out to me, which was confronting and took some time to process as I came to terms with the idea that I might well be a highly functioning autistic woman.

This was verified to a certain extent when one of my yoga teacher also kindly tried to help me make better sense of myself. Over time I realised some of my neurodiverse traits, which not only helped me in making greater sense of myself but also completely shifted my perspective on ‘fixing’. For years I had been trying to fix myself because I never felt I fitted in, and now I realised that there is a reason for this and that there is nothing to fix, and this helped me to reframe so many of my ‘ways’ and finally celebrate my differences and accept myself as I am.

Others of course don’t always recognise this, and it took a longer time to care less what other people think of me. I can suffer social anxiety, for example, and I loathe small talk, which is interpreted by others as arrogance or indifference. Lou was honest to share how our friendship had been intense for her, and I found this difficult to take on board initially, but now I appreciate that there can be a certain intensity with neurodiversity, because the mind is wired differently and this is OK too.

It perhaps helped that a book had landed in my hands many years ago now on Indigo Children. Coined by Nancy Ann Tappe, Indigo Children are believed to have certain sensitivities which give rise to heightened intuition, empathy, creativity and strong wills, often seen as spiritual and psychic beings, destined to bring positive change and traits include a deep sense of purpose, anti-authoritarian tendencies and difficulty with conventional systems. I have a sense that Indigo Children are neurodiverse, come in to shake up convention and positively shift human consciousness.

From my work I am conscious that often the more sensitive clients and students tend to display neurodiverse traits, and strong empathic and intuitive capacity. Many are deeply unhappy trying to fit into societal and parental expectation, doing jobs which quash their soul, and loathing themselves for their differences. It is always a delight when these clients and students immerse and commit to spiritual and healing work and begin embracing their sensitivities and making choices that allow them to live more aligned with these – they begin thriving as they accept and then embrace their differences.

Eventually things started coming together for Eben. After another particularly challenging time, especially with anxiety, I approached our doctor again and within days we had an appointment with CAMS. This was disappointing in many ways as Eben presents beautifully around adults, and the assessor had very little to go upon, no school records again, no video or other evidence of the behaviour we experience at home, so no recognition of potential ADHD. However the assessor was able to validate that yes, Eben was suffering from separation anxiety.

Often seen in neurodiversity, this has become normalised to us but is difficult for others to understand. He has never spent a night apart from either of us, and never goes on playdates or any home schooling gathering unless one of us is present. There was nothing CAMS could do to support us and we were grateful of this, not wanting to be systemised, and instead finding our own path.

Not long after this, and after a two year wait, Eben was finally assessed and diagnosed by the Autism Diagnostic Service with autism. I can’t tell you the relief Ewan and I felt to finally be heard and seen. The ladies at the Service were amazing and helped me to make sense of certain traits of Eben that we might have labelled ‘naughty’ or ‘difficult’ but were actually signs of hypo-sensitivity, quite the opposite to Elijah’s hyper sensitivity 

Having hypo-sensitivity means that Eben bangs and hits walls, screams, sings loudly, shouts, slaps himself in a non-harming way as if to ensure he is in his body, all of which is challenging for those of us sensitive to noise, but essential for him in regulating himself. It also means he can’t feel food around his mouth, so often has a messy face, nor notice temperature change so will wear shorts in winter and trousers in summer and refuse to wear a coat. He would live on rice and chicken broth given the chance, being more adventurous with food than Elijah, but still needing it to be presented a certain way, lots of little dishes if possible.

Eben also he needs lots of touch, lots of cuddles, which Elijah avoids. For years I was worried Elijah was rejecting me, that I had traumatised him somehow, but now I realise this is just how he is. And yet while Elijah will enjoy the touch of holistic therapies, Eben loathes anyone else but family touching him as he is fearful of pain. Eben is more expressive in his emotions than Elijah, especially jealousy and anger. Elijah has a tendency to suppress, not displaying much emotion.

Eben also needs time to be alone, especially after playdates which inevitably raise his energy. He prefers to be naked and makes a nest in his bed, where he retreats with his iPad, which is a helpful regulator. Interestingly, from a baby, I worked out that the best way to settle him was to wrap him in his blanket. In his earlier years we had a hanging cloth cocoon for him to nestle up in and gently swing. Now he still needs his blanket to settle him.

Eben’s stimming is different to Elijah too, and I was able to understand that him bending his fingers back throughout the day and kicking incessantly at night are in many ways beyond his control, other forms of regulation and dispersing excess energy. For a good while I had been expressing concern about both these things, but this is the benefit of diagnosis, it has helped me to understand that neither boys needs fixing, just accepting. 

I also have much more patience now towards the anxiety and his need to know what is happening next and the incessant questioning which accompanies this. So too the time required to separate and the ritual which takes place accordingly. He also has a much slower processing time than the rest of us. His hearing issue doesn’t help, but it takes him time to process what we are saying, and we often have to repeat ourselves, which does get tiring at times, but it’s just one of those things.

He can sometimes talk incessantly, forever wanting our attention, and interrupting. If he is excited then he becomes quite hyper and to manage this excess energy he will bother Elijah, often physically, to get a reaction for him. It is the dopamine hit and needs lots of careful management and heaps of patience.

He requires longer transition time than the rest of us too. He cannot be rushed, he needs time to transition from one activity to another, and so getting him out the house requires a long count down and even then we are regularly waiting for him. While this is still at times frustrating, I have had to let go of my expectations and so am less angered or stressed as a result.

This has probably been the biggest shift for us as a family, is letting go of expectation. Over the years Ewan and I have had to gradually let go of how we think it should be, versus the reality of how it is. Obtaining the diagnosis for Eben was a real game changer for us and has helped us to see him differently and recognise that he is not being naughty or awkward for the sake of it – we have been able to shift our perspective and our parenting accordingly.

It made a huge difference to Eben too. For years he had lived under the shadow of his ‘sensitive autistic brother’, and identified as the naughty one, the one always getting into trouble, being too loud or too demanding. But now he was being recognised for having his own neurodiverse traits and behaviours and this has helped him understand himself enormously. It was a turning point and his violence began easing, he was less angry.  

We are mindful of not labelling or victimising our children for their sensitivities and to allow them their own soulful expression. Seeking diagnosis for our children has been helpful in giving us the courage to honour their individual needs, which has caused us to increasingly live outside of society’s norms. It hasn’t been easy, we have been up against our own conditioning and the conditioning and judgement of others, especially friends at times too. But it has offered richness in so many ways and helped us be more contented with ourselves and as a family.

I hope this blog may be helpful to those of you also navigating this path. It can be a lonely journey to navigate and there were many obstacles to overcome, but it was worth all the hard work and the input from other professionals, albeit at cost. Homeopathy and nature have been a godsend, and I am grateful to all who have supported us – it’s of course an ongoing journey, but we are learning lots! If I can be of any help then do let me know.

Love Emma x