Tag Archives: Autism

My Sunday Photo 17.6.18

17 Jun



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.

Our PDA Story – A Small Step in the Right Direction

2 Sep

Today I am filled with emotions. A whole smorgasbord of emotions.

But I guess if I had to pick two – I’d choose excitement and NERVES. Lots of NERVES.

For today I received some news.

Today I received confirmation from an Autism Centre that my eldest boy has been ACCEPTED for assessment.

How the hell did this come about?

Let’s rewind.

Since I first had my lightbulb moment many months ago, I have been silently but steadfastly working towards a diagnosis for my son.

It started with a visit to the GP, who sent me to the Health Visitor, who sent me to the school nurse, who tried to send me on parenting classes. I spoke to the SENCO at school, who wouldn’t support a referral because my son is apparently totally fine at school (I want to swear here but am refraining), I spoke to a local council helpline, I spoke to a local Autism charity, who sent me back to the school, who sent me back to the GP.

Are you following?

Feeling abandoned by the authorities, I joined an online PDA Support Group and ordered several recommended books.

Then I read a fantastic post by a wonderful blogger whose daughter had been diagnosed with PDA. I contacted him via Twitter and asked for his tips on achieving a diagnosis. He not only provided me with a recommendation of a specialist centre, he also listened to my story, and told me about his own long journey.

Armed with new information and the unfaltering support of my family, I contacted the centre and began a process of private self referral.

But a privately funded referral did not guarantee my son would be accepted. I had to provide sufficient evidence to satisfy their clinical team that he was appropriate for assessment.

Since I have been wholly dismissed by the NHS since my son was 2, I had no previous clinical opinions or notes to support my case, so it was just little old me, articulating in a detailed and evidenced manner, why I believed he was suitable.

And after 4 weeks of waiting, the clinicians agree, and very soon I will receive an actual date for a full diagnostic assessment of my boy.

Armed with this information, I approached the school, who have finally agreed to meet me and have perhaps, just perhaps accepted that I might be onto something and I certainly am not going to go away.

After 6 years of feeling incompetent, crazy, alone and despairing, I now feel tantalisingly close to an answer.

And in the meantime, I have found some new wonderful allies. Fellow PDA parents who just “get me” and my boy. Having suffered the same frustration for so long, they are masters of this condition, experts on their children, fountains of knowledge.

So today, for the first time, we take a step. A small step in the right direction.

Dinky and Me

I am mum to Dinky who is awesome- she also has been diagnosed with Autistic Spectrum Disorder-PDA, ADHD and Sensory integration difficulties

She Said That, He Said This

There are always two sides to every story. By @Pols80 and @adadcalledspen


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