Bounce Back Blog: The Diagnosis
26 October 2018, by We Are Family (725 views)
Welcome to a half term Bounce Back Blog, in which our blogger revisits their earlier post.
The original text is in italics and was first published in October 2017. New thoughts are added in bold.
"It’s been one week since my son was diagnosed at St Thomas’ with ASD (Autism), ADHD, ODD (Oppositional Defiant Disorder) and major emotional regulation difficulties. He was diagnosed by a panel consisting of a Paediatrician, Psychologist, Psychiatrist, Speech and Language Therapist and Occupational Therapist who spent three hours assessing him. They were thorough, professional and understanding. I came out of the feedback in shock. It was not what I was expecting to hear from them, though of course I suspected it all. "
Well, a year on and things have changed, largely for the better. We have managed to access more support - including some for ourselves - and an EHCP for him (although that IS another story and unfortunately not over!).
"Four years of being continuously told that our parenting and attachment were really the issues didn’t give us a lot of hope in being understood. They did understand. Engaging him with the assessments was a challenge, they told me; the motivators changed from moment to moment. Not only is he easily distracted, he is very interested in what he is distracted by. And of course, he just does not understand people and how they communicate. They could see how on the edge he was at any given moment, a coke bottle on the brink of fizzing over.
I had to get my son home. Surprisingly, we managed without incident, considering what he’d just been put through. We walked through the door and I cried. For the first couple of days they were tears of devastation. It’s a paradox but although I know we’ve done everything we could have I did really want someone to say, ‘Just try this new thing and it will all be ok’ (a magic cure), ‘Give him some Ritalin and he’ll cope’ (I would try it!), ‘Turn your parenting around and he’ll be better’ (we have, things got a little better), ‘Try some therapy, he’ll engage’ (we have, he hasn’t). What they actually said was, ‘You have turned your world upside-down for this child, but you can’t do that for him forever.’ They think his problems will be lifelong and are mostly influenced by his genetics. So that’s Developmental Trauma out of the window, at least partially."
We were lucky we saw such experienced and qualified professionals who have been patient and kind and taken time to explain and reassure. I was asked to weigh up the long-term consequences of medicating against not. Really that was our turning point. We did decide to try medication, and it has helped. It has helped our son to access many things he could not before, education for one, friendships and fun even more importantly.
"Others’ reactions to the diagnosis have also been difficult. People immediately questioned its accuracy, whether we were convinced, ‘Was it really that thorough?’ The people who’ve been the most supportive and helpful on our journey have effectively been congratulating us on finally achieving some recognition of our difficulties as a family. They mean well - but they have missed the pain that comes with the confirmation."
I attended a lecture recently where I again heard the assertion that autism and ADHD are over-diagnosed in our kids. I had to raise the point that in a system where support is only given where there’s a diagnosis, are they surprised? Is it wrong? Of course it’s difficult to untangle all the different factors that have impacted our children, but support is the key. The right support is key. It’s important that our kids are seen as individuals rather than coming under any single umbrella term, whether that’s attachment, autism etc.
"Some have pointed out that he is still the same child as before. Well of course he is, but we must now shift our expectations and rethink everything. We are worried for his future, and ours. I have hope, mostly based on the relationship my husband and I have managed to build with him through sheer perseverance despite his difficulties and the lack of support. I do believe that, with the right support (that we will continue to fight so hard for,) our love for him will mean that he finds his way. That love now has to guide us through some difficult choices."
I still feel so hurt and angry. I am speaking with someone about it. All the years of feeling absolutely and totally blamed. Having it implied that our son wasn’t meeting my own expectations of what motherhood would be, that I hadn’t loved and claimed him enough. These comments that may never be thought of again by the professionals who make them can have a terrible effect. I am weeping now as I write about these things that happened over two years ago.
I know now that I held it in and contained all these difficulties for so long. I feel like we are now in recovery; rebuilding our family with the additional support and knowledge we now have. Of course there is more to come, but we are more forearmed and supported.
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