Will’s Story

Description:

Will presented such a mixed and confusing picture, but reading about PDA was like reading a description of my son. Knowing about PDA and what strategies to use has alleviated such a lot of stress on our family and made an immediate difference at school. We didn’t wait for a formal diagnosis – Will and everyone around him needed help now so we all just proceeded on the basis that PDA strategies work. Everyone needs to be open and honest and act quickly in order to achieve the best outcomes for children like Will.

Will was first referred to a paediatrician after failing his check with the health visitor at two and following concerns about his speech delay and aggressive behaviour at nursery. I queried autism from the outset but was told that he was just a bit delayed but otherwise showed no signs of a developmental disorder, though the paediatrician agreed to follow up in 6 months. I also referred myself for parenting course, as I thought I must be the problem! Will’s speech and general behaviour improved considerably after treatment for glue ear and removal of his adenoids.

However behavioural difficulties recurred after he moved to a school-based nursery, and at this point I realised that there may be something more going on and that the problems weren’t going away. School called in support from the local authority early years specialist who flagged that Will might be on the autistic spectrum. This was a bit of a surprise after being previously assured otherwise. Also we saw such a mixed picture at home, there were times when we thought he was on the spectrum but other times when we thought he definitely wasn’t. He could demonstrate empathy in a way you wouldn’t expect, he made good eye contact and could accept changes to his routine, but his moods seemed to change so rapidly.

In the meantime we had two follow-up paediatrics reviews, seeing a different paediatrician on each occasion. At one appointment ADHD was suggested as a possibility, and at the other many signs of autism were noted and Will was referred onto the diagnosis pathway with a speech and language therapy appointment scheduled in a year’s time.

It was fortuitous that around this time, through my job as an inclusion manager, I was sent some information about PDA in relation to a pupil in my school. Reading this was an absolute eye-opener as I could suddenly my son's difficulties in the description of PDA. My husband had exactly the same reaction; for the first time we were reading something that fitted Will. I went through the EDA-Q checklist on the PDA Society website and found that I was ticking all the boxes for PDA tendencies.

We now knew what we were dealing with, started to put strategies into place immediately and found that he responded - we could get him to comply and he had less meltdowns! Knowing what PDA is and knowing what strategies to use has alleviated a significant level of stress on our family. Before, all I was doing was blaming myself for my parenting, blaming my husband and even blaming Will, thinking his behaviour was deliberately bad. Now I understand him and my relationship with him is growing stronger again. I felt I lost him for a while but I now have my little boy back and I know how to help him. It has reduced the pressure on Will and ultimately I believe it will be key to helping improve his self-esteem and protecting his mental health.

We’re now educating everyone about PDA and not letting ourselves be put off by conflicting views. Our paediatrician felt that demand avoidance is a ‘symptom’ of autism. Our educational psychologist was not fully aware of PDA but listened to our views and agreed that any strategies that work for Will should be used. I took all the PDA information I could lay my hands on into school, and the SENCO found it equally enlightening. Will’s school put 1:1 support in place and started to implement PDA strategies; straightway things improved. At one point he would be very resistant about attending school, but now he’s going in, staying in and is more able to learn.

We are using a home-school diary which has been fantastic. I can make gentle suggestions when his teacher or TA explain a situation that might not have gone so well and ask for my input and I also share details of difficult situations we’ve had at home. Together we’re exchanging ideas about what works and also reading his moods and planning around this.

Because of my work I may have had more confidence to share my concerns and the information I had gathered about PDA with school in an open and honest way. I don't expect them to know everything or that every day will go well. The people working with Will are human beings and it is stressful for them too, as much as it is stressful for me as a parent trying support him. I think it is important that the school do not feel judged or criticised. I had been in the same position as they were, trying to help and following the advice of autism specialists for more typical presentations of autism but feeling frustrated because these interventions weren’t working. If a parent had come to me in the past saying ‘I think it might be PDA’ I’d have grabbed that as a real lifeline. If a school is genuinely inclusive they want to find the thing that works.

Also schools might have to wait months and months for psychologists to assess a child, and in the meantime they have to handle the child so they need all the help they can get. Honesty is absolutely the best policy, both ways round. For this to work you have to build trust. Recently I attended a meeting with Will’s teacher, SENCO, TA and out of hours provision staff and I genuinely felt that we were all a team working to meet his needs.

Early intervention is vital, if you leave it too late a PDA child will become too anxious and have really negative associations with school. Also it’s hard to see the individual when you have 30 kids in the classroom, so teachers need a parent to advocate for their child and provide them with the right tools. It’s also about prioritising, and I feel the key is to put the necessary accommodations in place to enable Will to feel less anxious. If he’s more relaxed he’ll be more amenable, he’ll attend and he’ll learn. Without this as a first step I can see why so many educational placements breakdown for children with PDA.

Will doesn’t have a formal diagnosis at this point but knowing about PDA has helped me to understand and advocate for him and implementing PDA strategies has made the world of difference both at home and school.

 

Download Will's story