We didn't know who to turn to

Emily Way-Evans writes about the heartbreaking moment when she discovered, through the ableist judgement of two fellow mums, that her child was considered 'different'.

When I consider the journey of discovery with my son’s neurodivergence, I always think back to a moment during a playdate when he was almost two years old.

My son was jumping on the sofa, whilst the other two boys were sitting quietly, playing with a train set.

I remember saying: ‘oh he’s always like this, he has a lot of energy’.

The two other mums looked at each other in this very specific way, as if they were silently asking: ‘yep, you thinking what I’m thinking?’

They clearly had an opinion of my son, but I wasn’t sure what it was.

I remember this moment as pivotal, as it was perhaps one of the first times it became obvious to me that my child was considered different.

These women were judging my son, who I loved dearly, for behaving in a way they did not consider “normal”. It stung. But I tried to push it aside.

He had started walking at the age of nine months, running at ten, jumping on the trampolines at the soft play like a tiny baby with three-year-old legs.

But I had been exactly the same at the same age, so had my brother. To us, this was all to be expected, and part of the toddler process.

So, amazed and perplexed looks from those around us were - as far as I was concerned - a compliment.

But that particular look stayed with me, because as a first-time mum, all you want is to find camaraderie. To feel like you’re doing ok and not fucking things up.

I had experienced postnatal anxiety for much of the first year, so the pressure I was already putting on myself was almost suffocating.

To feel judged by the mums I had befriended, as well, in a way that I can now see was ableist, was enough to create a tiny crack in my sense of belonging.

It wasn’t until the nursery years that the parenting struggle began to feel noticeably different from others.

My son would refuse to get out of the car in the nursery car park, absolutely frozen to the spot. I was seven months pregnant at the time, so I was not going to wrestle with him.

If I did manage to persuade him to go inside the building, he would then lie on the floor and scream, while the nursery staff stepped over him.

We would usually end up back at home watching Stick Man on repeat for the rest of the day, wondering why on earth we were still paying the nursery fees each week.

At the park, he would run off as soon as we reached the gate to the playground - not in the direction of the slides, but to the bushes, where I would instantly lose him.

He didn’t want to go on the swings, he wanted to run and run and run. The looks from other mums went from sympathetic, to pity, to discomfort, and finally indifference.

Eventually it was my aunt, a retired preschool teacher, who sat me down and explained to me that she thought he was presenting as autistic.

I will always be grateful for her kindness, because although the news was broken to me so gently - as if the mere mention of autism would be painful to receive - it did not even make a scratch.

There was nothing anyone could have told me about my son which would make me think less of him. The words simply settled in me, as if I had waited for them all along.

Perhaps it was because he was just like me, so I never saw it as a problem. It was all just normal presentation.

However, it was others who might see it as a problem, and that was the painful part; that was the battle I would have to fight.

So, the next logical step was the health visitor.

We went to the clinic on the advice of my aunt, with concerns that he should be properly assessed, outlining to the health visitor what we thought his coping techniques were, his stimming behaviours, his eating restrictions, and his lack of speech at three years old.

She visited us at home and watched him play, she took note that he was sociable, made eye contact.

She asked why we were giving him Weetabix at 3pm. She said we should be giving him three proper meals a day.

I explained that he didn’t eat those meals; that we had tried and tried but he would only eat Weetabix, so we let him have that, rather than go hungry.

She took notes and shook her head. We then received a referral for anxiety support, which would never materialise.

We were left feeling devastated and confused, not knowing who to turn to.

But it was the covid lockdown that really highlighted how much our son was struggling.

His routine was broken, people he was used to seeing were no longer around and his dad was now working from home but couldn’t be disturbed.

He was distraught and dysregulated and started to have regular meltdowns.

So, I went straight to the GP with everything written down in front of me. I was on a mission.

The doctor asked me: is he making eye contact? Is he sociable?

I answered: Yes, and yes. But surely there is more to it than that?

Even I - with no medical training but access to Google - could see that there is more than one type of autistic profile.

I proceeded to give him my very long list of other flags and eventually, a referral was made.

But that was just the beginning, and we are still awaiting an assessment. So, we have made a diagnosis of our own, and that is enough for us.

As he has grown, we have learnt more and more about him, about ourselves, and about neurodiversity.

We have realised that support has to be fought for; constantly pursued. That we need to find our own resources and educate ourselves.

We spoke to a child therapist, took part in courses with the PDA Society, watched videos on ADHD, read books on low demand parenting.

We have tried and failed constantly to find the right strategies to help him, acclimatising to feeling utterly exhausted and sometimes hopeless, whilst simultaneously feeling so much love and pride, and being constantly amazed by his abilities and beauty.

We have been battling daily with the conditioning in ourselves that parenting should look just like everyone else’s, or that we should bring up our children in the same way we were brought up.

We have carved out our own parenting path suited to our children’s needs, prioritising their mental health, as well as our own. We might not fit into every box, but we don’t care, because we have our own beautiful, complicated shape.

Getting to this point with my son has taken many years longer than it could have done, because we were judged instead of listened to, and because general knowledge of the different presentations of neurodiversity is limited.

Instead of being led by health professionals, we were forced to take control of the situation ourselves.

So, when it came to my daughter, we were more prepared. The knowledge we gained from my son’s experience had given us the boost we needed when attending to her needs, and asking for them to be met.

As soon as I recognised the flags in the preschool years I went straight to the GP and demanded a referral.

I knew from experience of my own diagnosis journey that autistic presentation in girls is even more over-looked, so I made sure to keep a record of how she displayed at home, and how she was masking in an educational setting, and most importantly: the connection between them.

School is still a struggle for both our children, and I am very aware that they may not stay in a formal setting for much longer. The school environment is not well suited for those with demand avoidance, and not many other options are available.

But for now, we help them as best as we can by communicating continuously with the teachers, helping them to regulate their own emotions and providing a low demand environment at home.

We make sure they feel accepted and loved for who they are, because even if some people think the way they behave is not considered “normal”, we think they are fucking brilliant.