How did you feel about your child’s diagnosis?

Hi All

My beautiful, funny, creative, spirited son has recently been diagnosed with autism, after 2.5 years of us reaching out to our GP. He is 6 now. 

He is much loved by our little family, but we have gone through a rolllercoaster over the last 3 years. He was a sweet, happy, smiley baby. Around the age of 2.5, we have noticed that he had some developmental challenges. This coincided with the pandemic, which initially let us to think it migjt have been related to lack of social contact during the pandemic. As his challenges grew, we reached out to his GP for help, who referred us to couple of different services. After several appointments with speech and language, educational physiologist , paediatrician and other professionals, and much chasing, we finally had his ASD assessment. 

His school has noticed early on some of his differences and challenges, and he has been on the school SEN list for a while now, with an ongoing EHCP application. 

So….I should have been prepared for an autism diagnosis, BUT, it still somehow hit me when we actually got told he meets the criteria for a diagnosis.

I am surprised by how I felt emotionally upon being told. I cried all afternoon after the meeting, heartbroken for him, perhaps thinking life will be more challenging for him. It should have been perhaps more of a relief, as now he is more likely to have the support put in place for him at school and that I was right as his mother to recognise his challenges. But I don’t feel the relief. I feel sad and worried for him.

How did you feel at this point? And what did you to start understanding your child better and support them better? 

Thank you! 

  • Hi I too received an Autism diagnosis today for my 9 year old son when asked how I felt I said I did not want to hear he had this although we have been awaiting from ADHD or Autism diagnosis since he was around 5 apparently it overlapped to look like ADHD but is Autism confirmed today, on one hand I'm glad I can give him more support I also feel sad and worried and numb.we have been told we can take our child to a Autism workshop where the experts along with 4 other families/children with Autism can be told about the diagnosis they have this work shop is set for a few weeks time I feel confused as to how my 9 year old will feel about hearing he has Autism.i want to fully support in every way I can.are you feeling better today with regards to your 6 year olds Autism Diagnosis?

  • Dear Suri, 

    Thank you for sharing your experience with the online community. 

    You may find the Parent to Parent Emotional Support Service a helpful resource, this service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences. To request a call, complete a web enquiry form here: www.autism.org.uk/.../parent-to-parent-helpline 

    I hope this is helpful.

    Kind Regards,

    Rosie Mod