DS aged 9 has just been diagnosed with autism. It wasn’t a complete shock but I’m still feeling very emotional. He is healthy, happy and making progress at school, I know it is not the end of the world. I grew up with an uncle who has autism, alongside other complex needs, so I have a bit of knowledge, or I thought I did.
For background: I always had niggles about DS since he was about 2. Concerns about his motor skills started from age 4 and he was referred to OT at age 7/8. During an OT assessment, observations about autism were then made- DS social awkwardness and mannerisms, cue referral, assessment and diagnosis over a year later- aged 9.
I’ve been given an after diagnosis pack to read but it’s making tearful and I burst into tears when picking DS up from school. He is aware that he was being assessed for autism but I don’t know whether to tell him or not? DP thinks not- he feels it won’t change anything.
Can anyone advise me what their first steps were? I’m planning to have a meeting with the school (when I feel a bit calmer) to discuss any extra support. We’re in Scotland so no EHCP and CAHMS weren’t able to give me much information about getting a care plan, or if I even should? He receives some extra support for social skills but I feel needs extra support with written communication. We also need support to manage his meltdowns and help him with anger, in particular. I’ve been given booklets on DLA but don’t know if he would really qualify.
I’m scared of telling wider family as autism remains a bone of contention, due to the misunderstanding and mistreatment of my uncle.
Sorry if this is long, I would be grateful for any advise from other parents, thanks.