It’s D-Day: The diagnosis

8 Jan

So today is the day. Here we are.

The assessment we waited so long for, is finally over and we have a diagnosis.

My son has autism.

More specifically, the clinicians believe he has Aspergers.

Despite my fears that DS1 would mask his issues and that once again I would be accused of poor parenting, for once, these people could see through his superficial capabilities to his underlying difficulties, and for once they agreed that I was right to have concerns.

So how do I feel?

If I’m honest, I don’t know.

I do know I feel vindicated. For 6 years I have believed that there was something wrong. For 6 years I have been asking for help. But for 6 years I have been rejected, dismissed and accused of being the cause of my son’s problems. For so long I have heard excuses and been made to feel insane. There are times I have doubted myself and questioned my ability as a parent. But it is this very ability that gave me the instinct to fight to be heard. Like any parent, I know my child better than anyone else, and today the professionals finally confirmed that.

I expected to feel angry. Furious at those people who have failed me and my son. The NHS professionals who refused to refer him for assessment, the education professionals who refused to acknowledge my concerns and instead suspected me of child abuse. The numerous people who blamed all his difficulties on my decision to go to back to work and the ignorant people who insisted he couldn’t be autistic because “he was too smart”.

But in truth I don’t. I don’t have the energy for anger. It’s a wasted emotion right now.

I’m exhausted and numb.

I’m also confused. Because the diagnosis of Aspergers isn’t quite what I had expected. And right now, I don’t know what that means. I need time. Time to process.

Since finding PDA, I felt I had found my son. It was my lightbulb moment. The PDA behaviours fitted my son, and the PDA strategies worked in managing his issues. So I’m nervous that in classifying him Aspergers, the professionals will request support and strategies that won’t really hit the spot.

But right now, I see this initial diagnosis as a key step forward. There is no doubt, my son has an autism spectrum disorder. There is recognition that he suffers from sensory processing disorder and struggles with many social and communication skills that we take for granted. There is agreement that his difficulties cause him intense stress and anxiety and that his meltdowns at home are the result of him holding himself together at school. So this is a foundation upon which to build.

And when I get the full report and have had time to digest it, the fight will begin again.

In the meantime, thanks to those who have listened and supported this far. It has meant the world.

7 Responses to “It’s D-Day: The diagnosis”

  1. billumbillmex2014 January 8, 2016 at 11:22 pm #

    Now you can begin to build. Formal acknowledgement of the real challenge is the foundation for the future. Well done you for standing by your little man. See you Monday.

  2. OnPinswithPDA January 9, 2016 at 8:28 am #

    Hello, I’m new to all this! We’ve just been referred for Neuro Developmental Pathway autism assessment and I share your concerns about whether they’ll miss the PDA bits and therefore recommend strategies for autism that have failed us in the past. But formal diagnosis is a real step forward and it sounds like your understanding of it all will keep the professionals on the right track, good luck 🙂

    • ferreroroche123 January 9, 2016 at 6:59 pm #

      Welcome! You and me both. This feels like a whole new world to me, but at the same time, nothing has changed. He’s still the same boy.

  3. journeyformybaby January 9, 2016 at 7:53 pm #

    I had a feeling reading your last post. It definitely sounds like you finally have an accurate diagnosis. I hope the treatment and management plans will suit your little man and family perfectly and finally help you all have peace at home.

  4. Nicola January 11, 2016 at 4:50 pm #

    Hi. I seem to be living through a similar experience at the moment. I was wondering where you went to eventually get your diagnosis? Your story has inspired me to keep pushing on, because so far I’ve been shouting on deaf ears and I’m ready to try a different route.

  5. Danielle Jata-Hall March 7, 2016 at 9:11 pm #

    Hi there, I just wanted to say that I have read some of your blogs regarding your son and I feel like you could be describing my daughter. Some of the things you have written about even made me cry, they struck a chord. They are funny and well written, as well as being poignant at the same time. I wanted to email you directly but was unable to see a contact section on here. I’m glad you have your diagnosis and you can definitely move forward. We are so far away from that point yet and every day feels like an up hill battle. I wish you all of the success for the future x

    • ferreroroche123 March 7, 2016 at 9:20 pm #

      thank you for your kind feedback. If you would like to get in touch privately, I can email you so you have my contact details.

      I’m sorry you are feeling a long way off diagnosis and days are hard. We had to go private in the end as my sanity wouldn’t have held out much longer without some answers and validation. We still have battles regularly, but we definitely all feel calmer and on the right track as we know what is causing the behaviour and can stop punishing ourselves, but work with our son to help him find ways forward.

      Best wishes x

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