How would you feel if your child was diagnosed with Autism?
Two weeks ago, I had the following conversation.
Doctor: "What do you think?"
Me: "Um, I think that, yeah, sometimes he struggles to fit in to the normal conventions. I know that things that wouldn’t be a problem for others, somehow those things are, yeah, a problem for him."
Doctor: "And what about you, do you think you have autism?"
My son: "I have no idea, maybe."
Doctor: "Your son does show traits of autism. He has autism... He is highly functioning… words...
Hanna, I feel like you’ve just put exactly how I feel into words… words that I couldn’t find myself. Firstly thank you. Secondly, my 10 year old son was diagnosed on 26th March 2018 after a 4 year long battle, including Physio, Occupational Therapy, Behaviour management, Mindfulness coaching, Educational Psychology all of which prolonged the ultimate diagnosis. I hope you don’t mind but I have shared your story. And again, thank you.
Hi Haley, I am proud to have shared my experiences to raise awareness and glad that other parents, who’ve been through a similar thing, can relate. It can feel like a very lonely process, but talking and sharing our experiences helps. Good luck with getting the right support for your son after all this time, and remember that you’re never alone with it all!
My son was 14 when diagnosed (thanks to a new SENCO at his high school). My feelings when we got his diagnosis – relief. Everything now made sense. My husband and I are both teachers, but it is harder to see when it is close to home. Our son had lots of problems in school due to “being different”. He hated going due to bullying etc…
After diagnosis I went to a series of sessions for parents of children with a new Autism diagnosis. This was amazing, and also helped me with my teaching. My son is now doing really well and is in the second year of his degree at a top University.
Thanks for your thoughts JBL. It’s reassuring to hear that the diagnosis helped your son and your family. Its great that there were groups to get support from. It’s also very positive to hear how well he is doing now. I hope that the support my son gets will enable him to feel better understood. I’ve been reading lots around ASD to help me understand more, which is helping me learn 🙂 Hanna
I have been a teacher for almost 32 years. 2 years ago I was diagnosed with ASD, Aspersers is no longer used as a classification. I was always different but I did not know how. Why I did not fit in? I did not understand why my ideas were not accepted by my colleagues. I am a creative thinker and do not fit in the box. I ask questions to deepen my understanding or challenge things which given the evidence undertaken (research) is questionable. The diagnosis helped me understand myself. Since sharing my diagnosis with my colleagues’ this has not translated in a way which helps me in the workplace. The mask is firmly on.
I have always got on with pupils with additional support needs. They need to be listened to and respected. They need to be asked what it is they actually need to succeeded or a plan to try things out together.
Compassion is needed, be it a pupil or in my case a teacher with a lot of experience.
I’m glad to hear it’s helped you understand yourself but sorry to hear that your colleagues haven’t grasped an understanding. I agree- compassion is key. I hope things improve soon.
Hanna
Dear Hanna,
Thank you for your article. It is exactly about my 12-year-old son and his experiences.
He is an amazing boy but very different. He lives in his ideal world and finds it difficult to accept reality.
I want him to be educated in a mainstream school and he really loves his school and children. However, every day is stress and he said that he can’t take it any longer – constantly being in trouble, mainly because of his endless “Why” and being blunt. Last Friday, he attempted to self-harm at school at the prospect of being punished for his “behaviour”.
He was even taken to A&E. I don’t know how to make things easier for him at school.
It sounds like he’s in crisis right now. From what you’ve said, his school isn’t understanding or supporting his needs, can you move him somewhere else? Mainstream schools can work just fine, as long as they understand how to support autistic children. Speak to his school about his needs and make sure they have a basic support plan in place.
I’m sorry to hear how difficult it’s been- I hope you have someone to speak to, maybe a friend who can support you emotionally. I’d suggest you speak to your doctor who should offer some guidance to support your son, especially with the self harm. It can be so difficult, but things can improve- keep fighting for your son.
I know this article is a few years old, but just reading it makes me feel not crazy. I’ve known that my son is different since he was a baby.
But because he has no intellectual deficit and some of his unusual behaviours can at first seem quite subtle (if you’re not around him 24 hours a day) it is really, really hard to be taken seriously or believed. I’ve been trying to get him referred or assessed since he was 2 years old, and finally, at the age of 9 his referral has finally been accepted and he has been put on the waiting list for assessment, which in our area is 3½ years long – they are currently booking appointments for children referred in January 2018.
I’m genuinely afraid for him going to secondary school in two years. I used to be a foster carer and I’ve seen what can happen to children like my son. At the moment, unless help is in place and his needs can be supported properly my plan is to home-school him when that time comes. I am extremely fortunate that he currently goes to a tiny independent school where he gets tons of one-to-one attention and extra support (but even they are sceptical about him needing an assessment, despite the fact they freely admit they give him additional support!)
I feel so sad for my son, I get that a diagnosis doesn’t change the amazing person that he is, but it would publicly give him ‘permission’ to be who he is without apology, blame or judgement, and most importantly open the door for support and understanding for him and maybe even for me.