A message to all of those parents out there that are currently fighting for a diagnosis.
It gets better
It really does, I remember the stress, the sleepless nights, the worry, the feeling like nobody believed you, nobody was listening to what you were saying.
Its hard, its really hard
I remember taking my lad out and the stares from people as he flapped and spun around in a shop, or worse lay down on the floor and screamed.
You learn to cope, you stop seeing the judging faces, you develop strategies that work for you both.
I remember trying to explain to my Mum and Dad what was going on that that they seemed to think at first that he would get over it, he would grow out of it. I remember those conversations
They will come round, they will start to understand, they will see it in the end, share the reports, keep talking to each other, sit down have the chat, cry it out if you need to, they will understand in the end.
I remember the endless amounts of people telling me that he will just wake up one day and talk, it will all come overnight, he’s just a slow developer
These sorts of conversations hurt, they hurt because they are trying to make you feel better but you know deep down that what they are saying is not true, stay strong, they mean well, they don’t mean to hurt you, they just don’t understand.
I remember the 1st day of school being terrified that he wouldn’t cope that they wouldn’t understand him
I was right, it wasn’t easy for him, it wasn’t easy for me and it wasn’t easy for the school, it takes time, they need to develop a relationship with your child, they need to learn about him and learn strategies that work, its terrifying for both of you, Talk to them, go in, explain what works and what doesn’t work, work with them not against them even when it feels really hard to do so. Your child will benefit from it in the end.
I remember being told he wasn’t Autistic, that he was just different and that he would be ok, he isn’t Autistic he looks like a normal child, he isn’t Autistic he’s just a late developer.
You know your child better than anyone else, you know all his/ her quirks, you know why you believe that he has these issues, you are the expert, collect evidence, take photographs, take video’s of behaviours, document things, you are the expert and the professionals should be listening to you.
I remember the long long wait for that final assessment
Its hard for everyone, remember everyone is going through the same thing, they don’t triage these referrals as it would mean that some kids would just never get seen, believe it or not waiting times are coming down nationally as the focus on Autism increases. Sit tight, keep collecting the evidence and your assessment will happen.
There is information about the assessment process on the NAS website