Ben was diagnosed in October 2019 at the age of five, although he was initially referred when he was about two years old. It was frustrating and confusing - as nothing else we’ve ever experienced compares to the process.

From it being suggested that he may be autistic, all through the referrals and test after test; it just became part of our lives that he would have an appointment for ‘something’ every month or so – always to ‘rule out’ it being something else.

For us the biggest setback was when, after a long time, we had a final appointment with a paediatrician that lasted ten minutes. We were told, ‘He’s fine, it’s not autism, he’s just……..’

Shell-shocked and deflated, we didn’t know what to do. Do we accept it? Do we argue? We’ve never had to suggest a doctor is wrong before. How would we even do it?

Our support came from the nursery he attended. Their guidance and knowledge of the process and referral contacts made it possible to raise our concerns and start the process again.

We eventually reached the paediatrician stage again and with so much evidence from observations, from the nursery and by this time the school he attended also – Ben was eventually diagnosed. Once it happened, it was a weird mix of relief – both happy and sad. Overall, we were pleased to have finished what ended up being years of time and effort.

As he has grown up, it has changed. His communication, both with us as a family and at school, has improved – sometimes he doesn’t understand why things are bothering him, which causes him to be angry and anxious. He relies on structure and status quo with specific things to maintain a base of calm. His PDA profile makes it difficult to negotiate changes and general instruction to action is often a battle.

However, because he is our only child and we don’t have any other friends or family with a child that age, we don’t really compare him with others. He just is the way he is and is learning about the world in his own way. If something takes longer or if we help him in a way that’s a bit unusual, we don’t really know about it!

We have always had feedback about how sweet and bright and curious he is, and he really lights up at things he enjoys. We try to encourage those things when they present themselves - such as Transformer toys, going swimming with the school and then more recently the use of the camera and the photography.

Judgement from other people and ‘stares’ from strangers are some of the challenges we have faced as parents. We used to feel embarrassment, but now it’s acceptance and an attitude of ‘let them stare’. We’ve also fostered a greater sense of understanding for other parents who are going through the same thing, sharing experiences, or even just talking to other parents about him.

Ben used to hurt other people frequently when he became frustrated. It took us a long time to get him to talk to us about why he might be feeling frustrated. He now tends to hurt himself more than others, although we have noticed the duration of these behaviours getting shorter. However, he can regress and some days are just so exhausting and the behaviours are intense.

Ben is also very stuck to routine. We usually have to give a three-step warning when changing an activity or leaving the house. Eg. ‘Ten mins, five mins, time to change activity now’. It doesn’t always work, but sometimes it makes changing activity or getting ready to go out easier.

Ben seeks ‘sensory feedback’ through - for example, hurting you when giving a hug because he doesn’t realise how hard he is ‘squeezing’, or leaning on you and nearly knocking you over! He also touches hair, and if he is standing behind someone with a long ponytail, he likes it to tickle his nose. We have tried to emphasise this is inappropriate behaviour and invades someone’s ‘personal space’, which Ben sometimes has very little understanding of. You feel you are being watched and judged by other parents for this ‘weird’ behaviour.

Ben struggles with noises like hand-dryers, which now results in us using mother and baby changing rooms or the disabled toilets, which gets a lot of judgement from strangers. We often ignore it, but sometimes it’s hard not be bothered by it, especially if Ben is having a particularly tricky day. It just rubs you up the wrong way sometimes.

We began letting him use an old digital camera we found in a cupboard. We let him hold it and he enjoyed the feel, the size and the moving parts (like the flash). We gave it batteries so he could use it. Afterwards we checked the camera and found he had taken some snaps.

We think he enjoys using the camera as an object more than the prospect of capturing a ‘nice photo’ but he is able to talk about what he saw when he looks back on them – many of them end up being quite good shots. He enjoys the holidays and exploring always gives a chance to ‘use the camera’ and it’s something that has become a positive to look forward to.