12 months ago I started a journey into discovering whether Mr 8 (now he's 9) was Autistic. We were lucky. Our wait for an Autism diagnosis was 9 months. I know some of you have been waiting years. Many have asked to be referred and haven’t because your professionals didn't believe you or you haven’t met the conditions of going on parenting courses or had family support yet. I am so sorry.
It shouldn’t be this way.
I've said many times, if I thought my child had diabetes, I think we’d be seen and tested quite quickly. I probably wouldn’t have to do too much of my own research or write my own reports. His blood would be checked, we’d get a diagnosis. (Apologies if I’ve got this wrong I know there are lots of occasions that parents haven’t been believed about physical issues).
But with Neuro issues and mental health you have to wait.
In June 2021 I was desperate for help with Mr 9 and a group of mothers on a parenting group pointed me in the direction of Autism. Once I had done some research and got over the initial shock it felt like my shades had come off and I could see my child for who he was.
Seeing him as Autistic made sense.
We adapted our parenting and expectations of him and things got better. I told his school to treat him as an Autistic child - slightly clumsy language in retrospect but they didn’t initially believe me and I had no idea what he needed in school or what they could do. I honestly didn’t know he had a right to have his needs met and school had to make reasonable adjustments even without diagnosis.
A term later and he has a lot of support in school, they see what I see and he’s doing really well.
All sounds good right?
Not so much, I was really struggling with the waiting and not knowing, I did a lot of crying. I described it as the space in between.
This is what I called the place I found myself.
So here we are the space in between.
Between that place where you know your child is autistic and getting that actual piece of paper that confirms it. But actually, its not as black and white as that. Some days I decided I was wrong, "this can’t be." I’d read about autism and think, "that’s not my child!" Or see a meme that didn’t fit. Being dismissed by professionals and gaslighted. I was a yo yo getting travel sickness.
Believing it 100%. Justifying it to friends and family. Having a wobble. Believing again. Up and down, round and round.
I was exhausted and close to burn out.
What do you do in that space in between?
I took what I felt was a massive risk and that was to believe he was autistic. I couldn’t stay on the fence or hold my judgement as I was going crazy.
Autism made sense. I felt Mr 9 made so much more sense once I had realised that. His issues didn’t go away but it gave us so much more understanding and I accessed support that was really helpful.
Mr 9 had told us that he was so sad he wanted to die and that his brain was stupid. We didn’t feel we could wait for a diagnosis we had to start having the conversations now and explain his brain to him. I tell that story here but he was so relieved to hear his brain was different – it made sense to him as well.
The space in between was too hard a place for me to live. I couldn’t wait, I had to choose a side. And that side was becoming more obvious.
Today I am talking to those of you living in the space in between. I get how hard it is and I am here for you. As a Counsellor I choose what I share about my personal life carefully. And I chose to share my story in the hope that it helps you, encourages you or just knowing that someone else has been there can be helpful.
I offer parent support where the time and space is for you and your story.
It might be that you need my undivided attention to tell your story.
You might want some practical strategies to get through this stage.
You might want to be empowered and feel confident to continue fighting.
I can provide all of this and our work will be tailored to what you need it to be. It won’t be about me and my story it will be all about you so you can do what you need to do for your child. I work face to face in Pudsey, outdoors and online.
Much love to you as you wait....and wait…and wait
Nicola x x