Why My Son is being Failed by the System

It was a long, hard road to get Picklepot diagnosed with ASD in the first place. I saw countless doctors who dismissed my concerns for ages, telling me I was over-analysing things, telling me I was a neurotic first time mother, telling me he couldn’t possibly be autistic because he made eye contact and because he wasn’t delayed in speech or language.

Without the support from his teacher, Miss B, and the school SENCO, Mrs D, I don’t know if I’d have had the strength to battle on. But they were in my corner, they knew I was right, and they gave me strength.

One doctors appointment the doctor had the nerve to observe him for all of 30 seconds and then say to me, “He seems normal to me. Why are you so concerned?” And, bristling from the comment of ‘seems normal’ – as if an autistic child is ‘abnormal’ by default – I slammed onto her desk my folder. I have been keeping a diary since Picklepot was in Reception. It is three and a half inches thick, with pages and pages of my notes, observations, print outs of information I have found that link autism signs with behaviour he has displayed. “This” I told her. “Read this. This is why I think he is on the spectrum.” She frowned at me. “I haven’t got time to go through all that. But really, he seems fine to me …” I glared at her. Mama Bear came out to play. “So on the basis of a thirty second appointment he seems fine to you so I’m meant to go away now am I? No. I’ve done this too many times. Let me put it this way. If you do not write a referral for an autism assessment, I will be back here, every day, with my folder, bugging you for the referral until it happens.” She thought for a moment. Then she said, “I’ll write a referral for him though, based on your concerns.”

We had various appointments after that with a specialist paediatrician at the local CDC (Children’s Development Centre) It was no surprise when he said in December 2014 that Picklepot was on the spectrum. In fact, it was a relief to hear him say it, after all we had been through, to finally know that I had been right all along.

I asked the doctor at that point, “What about the ADHD?” It was a secondary concern. Aware that the two conditions are known as co-morbid, and children on the autistic spectrum are far more likely to have ADHD, and with Picklepot displaying so many signs of it, I wanted a diagnosis for it all in one hit. The paediatrician refused to diagnose ADHD. “I don’t diagnose it in children of his age. They’re all displaying signs of it at this age. Come back in a year, and we’ll assess again.” I said that even his teacher and his SENCO had raised concerns of ADHD, and they were both well versed in dealing with children of his age (five years old, at the time) Still he refused, and insisted again on an appointment in a year to assess.

Fast forward a year. December 2016, and I’m anticipating a letter from the CDC with an appointment for Picklepot regarding his assessment for ADHD. I don’t receive anything, so I contact the CDC myself to ask about it. I’m informed that the paediatrician Picklepot was seeing has now retired. I say OK, so I need an appointment with his replacement. He said we would have an appointment in December 2016. Oh, says the receptionist. Looks like he signed off Picklepot as no longer requiring our care back in Easter. I am by this point very cross. He said we would have another appointment in December 2016 to assess for ADHD. I was not informed that Picklepot had been signed off from the CDC. Why was I not made aware? Oh, says the receptionist. We normally send a letter.

We normally send a letter. Well that’s really nice and all for those who receive a letter, but I didn’t. I’ve lived in the same house for almost 10 years and I did not receive a single notification from the CDC telling me that Picklepot was being signed off as I would have called them then and kicked up hell. So now I’m doing it on the phone, when I was promised a follow up appointment and I haven’t got one, when I was promised a further assessment and now I’m being told he has been signed off. No. Hell, no. You are not getting away with this. Mama Bear is out to play – again.

“Well how do I arrange an appointment for the assessment then?” I ask her. She informs me that he now needs to be re-referred into the CDC system. They will hold a meeting and decide whether the concerns raised warrant him attending an appointment to see if he needs an assessment for ADHD. I grit my teeth and ask, “How do I get him referred?” Oh, she says, either your GP or your school SENCO can do that. I ask her to confirm, as they would never accept a referral direct from SENCO for the ASD assessment. She confirms, Oh yes, the school SENCO can do it, that’s absolutely fine. So I hang up, and I go and speak with Mrs D, the school SENCO.

Lovely as ever, Mrs D says that’s fine, that’s not a problem, of course I will write a referral for an assessment, lets get this ball rolling and hurry up with this diagnosis. She knows as well as I do that in the last year, the signs of ADHD have increased in Picklepot, and he is now an anxious ball of emotions bursting at the seams and I am desperate for some help in soothing him. Mrs D then makes a call to the CDC to triple check she can definitely do the referral. Oh yes, she’s told, that’s fine. Who do I address it to, she asks. They give her a name.

Mrs D writes up a referral, and she sends a copy to the CDC, to the name they have provided her with as the person best placed to deal with ADHD referral assessment appointments, and she sends a copy to me, and a copy to our GP, and keeps a copy on file herself. We wait. Christmas looms closer and Picklepot becomes even more anxious, even more emotional, bursting into tears without notice, becoming violently angry with no apparent reason (to us), screaming and shouting and kicking and throwing things and then sobbing in my arms afterwards because he says he doesn’t want to be a naughty boy, he wants to be a good boy but he gets upset and his brain doesn’t work properly. My poor beloved boy, so desperate to fit in, to be like his peers, to not have these outbursts, crying because it all gets too much for him and he doesn’t have any other way of letting it out.

Mrs D receives a letter back from the person at the CDC she was told to write to. I am not the person you need to discuss this with; The CDC do not do assessment for ADHD; The patients GP needs to refer the patient to the correct department.

Why was I told by the previous paediatrician that the CDC did assess for ADHD?

Why was I not told by the previous paediatrician that he was signing off my boy before that assessment happened?

Why was I then told it was OK for SENCO to refer for assessment for ADHD?

Why was SENCO then given the name of the person to contact at the CDC for assessment for ADHD?

So many unanswered questions. I’ll probably never know.

At the moment, we’re waiting for an appointment with our GP, which is not until February (the soonest available appointment) Despite the fact it’s an appointment for the GP to refer Picklepot for assessment, not the actual assessment itself, I have to take Picklepot with me, my notes and my word aren’t apparently good enough to believe. Regardless of the fact this is a GP and not an expert paediatrician who fully comprehends and understands ADHD / ASD, I have to subject my child to being regarded by this stranger before we can get an assessment. I have to break his usual routine of school to take him to the appointment, so he will be upset about that. I have to sit in the doctors office and talk about him in front of him as if he isn’t in the room, something he absolutely hates, so he will be upset about that. I have to tell the GP why I think my eldest boy needs assessment for ADHD, so he will overhear me and think it is something he has done wrong or that he should change about himself, so he will be upset about that. And after all of that upset, I might get the referral for the assessment that we need.

The system is seriously flawed. After all of that upset, on top of how emotionally charged, raw and anxious Picklepot has been recently, he is going to be through the roof with his emotions. And it isn’t the CDC who will help calm him down when he’s sobbing his heart out and gasping for breath. And it isn’t the GP who will help soothe his fears when he’s awake in the middle of the night screaming in fear because he knows he is different and he says his brain doesn’t work properly and he doesn’t understand why. And it won’t be the receptionists I’ve spoken to who deal with the temper and having things thrown at them and having him lash out at them because he has all this emotion inside and he doesn’t know what to do with it.

Oh no, it’s not those who exacerbate the issue who have to deal with it. That would be me, his dad, his grandparents, his teachers at school. This system is flawed, and it’s failing my son.