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It’s definitely not autism it’s …

The guest post you are about to read is written by Julia Carter, Tracy Moon and Tracey Harrison.  It is a powerful example of an issue that we (the Cerebra LEaP project) are researching, namely the failure of many children’s services departments to have sufficient social workers with an understanding of autism. The research focusses on the causes and effects of this problem in order to bring about a systems’ change to the assessment and care planning process for disabled children.

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It’s definitely not autism it’s…..

‘YOUR PARENTING.’

Sound familiar?

A cold November day found me sitting in the draughty hall where the parenting course was taking place. The words of the over-enthusiastic parenting coach wafted over me and I tried to get comfortable, seated in the child-sized chair pulled up to a full-sized table which came up to my chin. I tried not to let my feelings show in my expression as I felt myself demoted from parent to pupil. I tried not to let my frustration emerge but I knew the course by heart; I had already done the same one twice before.

After my first experience of the Practical Parenting course I left trying to think positively; although I was almost destroyed by the notion that I was somehow at fault for my son’s challenges I tried to believe that I could do this, I was going to fix my 4 year old son. After all, I had my printed out star chart handed to me by the coach, the list of activities to do with my son specified by the coach, and a further list of healthy food my coach insisted he eat; I had sat and listened to two hours of how to be a better mom.

By the time the second course took place I felt totally deflated as none of the strategies had worked. I felt, yet again, that I had failed. However, I shouldn’t have been surprised: the course techniques were just a variation of my regular parenting and, I was to discover, totally unsuitable for my son. Yet I persevered.

My son was now 6 years old. Life was getting harder, the behaviour, the lack of support from school, the constant stares in the playground when he would go into total meltdown, I felt more despair, more like a failure. Why was my son still behaving so differently compared to the other kids at his school, to his two sisters, why was everything so challenging with him? I had done everything I was told to do, but things were getting worse. By the third course, I was angry, resentful and exhausted. It was six years on from my first parenting sessions and my son was now in a mental health crisis and about to turn 10 years old. So why, I suddenly thought, why was I there? Why was I putting myself through this again with no sense that the outcome would be any different from the previous two occasions?

The simple answer was, to jump through a hoop, to tick a box, to meet an unspecified criteria.

Every time I managed to get an appointment with the children’s health services, which in itself took months, where I raised my concerns that my son may have Autism, this is where I was sent. This was the necessary route to gain assessment, in spite of there being autism in the family already. So, sitting with a drooping head, weary of listening to the advice of this young person fresh out of education, my blood started to boil. I stood up, explained I felt ill and left. As I crossed the parking area, I noticed the parenting coach watching my departure through the window. In an act of defiance I walked to the nearest bin and shoved the latest lot of star charts and activity lists straight into it, turned and headed to my car. I only got half way and panic set in, I shouldn’t have done that! I should have just left and got in my car …

What caused that panic? The looming threat of Social Services.

I had heard horror stories of parents refusing to do the courses; parents who complained about a lack of assessment and then found their children being placed on Child Protection Plans, the parents themselves accused of emotional abuse for the very act, it seemed, of advocating for their child. I sat in my car, feeling sick, trying to think of a way to undo what I had done. Then common sense took over; this was ridiculous, I was going to complain and I was going to make sure I was listened to.

It took a long, and complicated time for that to happen, and caused a lot of heartache; my son declined into further mental health crisis and I feared I would lose him to a hospital, or worse. Thankfully with support from my family and friends we fought to get him assessed, and boy was that a fight. He finally got a conclusive diagnosis of Autism.

A further battle then took place to get him the medication he needed to bring him out of that mental health crisis. It has taken a further five years for my son to heal from the lack of support, to heal from the lack of understanding, to get well.

He is and has always been, a bright, curious child and he is now about to sit his GCSEs. He wants to go to University, he is a true fighter.

It has taken eleven years from the start of my asking for help, for me to feel like a good mum again.

 

All’s well that ends well…..

THE BATTLE CONTINUES

Sound familiar?

After my son’s diagnosis I felt vindicated, I had been right all along, my son was, indeed, Autistic. But if that had happened to me, I wondered, what about all those other parents still attending these totally inappropriate neurotypical courses, their children potentially heading into mental health crises? What if one of those children doesn’t make it back from that?

I know that these courses do offer support for some parents and for neurotypical children, but they should never replace an assessment for neurodiversity, they should never cause a delay in potential diagnosis and crucial therapy. I can’t imagine this would happen to a parent of a child with a visible disability. The threat of Social Services, that too, should never be used to make a parent jump through this pointless hoop, this could not go on.

So I once again got into warrior mode. I will, I thought, save the ASD community, I will fix this. I now look back and think of my blind naivety.

I had taken my complaint as high as I could, the PHSO upheld the majority of my complaint, and the service had actually agreed to hold development training for its staff with my experience being at the heart of those sessions. Here was an opportunity for me to try to reach out to professionals. I talked passionately to the CAMHS team about the voice of the parent, the need to listen. I thought I was making a difference.

Now, tick boxes come in all shapes and sizes. I discovered that I had unwittingly ticked a service user engagement box. Did my passionate plea for change work? Sadly no. It quickly became apparent that this is an embedded culture of parental blame, and it’s not going to go away because I want it to. It doesn’t even go away when professionals hear it straight from the parent themselves. Moreover, I started to hear of further horror stories that made my experience seem like a walk in the park: parents attending up to 18 parenting courses before assessment; children left suicidal; parents accused of abuse for simply asking for a full assessment in accordance with NICE guidelines; children who eventually are diagnosed with significant neurological disabilities, whose neuro diverse behaviour is blamed on the parent; families torn apart, broken. How could this be? I started to reach out to other parents, uncovering the honest and true accounts of their horrific experiences has left me devastated.

I voiced my frustration and anger to the management of the services, and suddenly there was a change in their response and attitude towards me, I got no answer to the numerous emails I sent outlining poor service user experience. In fact I was told, in a similar condescending tone to the leaders of the parenting courses, that perhaps it was time for somebody else to carry forward service user experience.

It would, at that point, have been easy to give up. But I am the veteran of three parenting courses, and I have developed considerable stamina. I pushed and I pleaded, I wrote and I telephoned; I had meeting after meeting and I dug for and found more evidence to substantiate my findings. In short, I did not let go and after a very long and often tortuous time, NHS England have, in the last few days, agreed to conduct a review into the issue of parental blame. I hope that now, parental voices will be heard, and their children’s needs properly addressed as a result.

I think I might award myself a star for my chart.

 

Julia Carter, Tracy Moon, Tracey Harrison