Published on 12, July, 2020
Hi everyone
Our little boy is 18 months old and we strongly suspect he has autism (two professionals have told us he has a lot of red flags and he scores about 15 out of 20 on the m-chat questionnaire but we are still on the waiting list for an official diagnosis which is around a 2-year wait where we live in the West Midlands).
As my husband and I begin to process what autism means for our little boy and our family, our main goal is to find other parents going through similar things, people that really get the situation, how frustrating getting a diagnosis can be and how limited the support is during this “limbo” stage. As we’re first time parents we felt we’d hardly got going on our parenting journey before we started feeling very isolated by our circumstances, and now find it hard to relate to our peers with neurotypical children as the differences feel so stark, so socialising as a family no longer feels practical or enjoyable as our little boy has no interest in other children (or adults) and having to constantly explain his behaviour to others feels both frustrating and upsetting for everyone involved.
At the moment it feels a bit like we’re the only parents going through this but obviously I know that’s not true. I’m really keen to reach out to others who feel in the same boat, who’d like to find new friends to share the journey with and want to find a “new normal” together. Our little boy is our world so we just want to find a way to make our world his, too.
As I said we’re based in the West Midlands but also looking for virtual friends too. I strongly believe that finding our tribe will make us stronger together as we face the many challenges ahead, and knowing we’re not alone feels so important right now.
Really looking forward to hearing from you, future friends!
Lucy
Hi
Welcome to the forum, I am mum to four children (one is in his 20's now) the others are 8,7 and 17 months,
I understand what you mean about the limbo waiting for diagnosis, we have been trying for assessment for nearly 5 years now.
Have you tried looking for local support groups? You are welcome to attend these without diagnosis, they are great for connecting with other parents, there is also the nas parent to parent service, I can't really give much information about this as I have never used it.
I found talking to autistic adults gives me the best insight into understanding my daughter, there are alot of autistic writers and bloggers out there who can help.
Anyway just wanted to say welcome!
Thanks so much for your reply, sorry I’ve been away for a while! Oh my goodness, that’s such a long wait! I really hope you get somewhere soon. Do you think you’ve faced extra struggles because you have a daughter? I’ve heard so much about how the system is set up to diagnose boys, but I really hope that’s starting to change. Where we live, support seems to be tailored to those who have school-age children so not much for the early stages of diagnosis with a toddler unfortunately, at least not that I can find! I haven’t heard about the NAS parent-to-parent service though, that sounds really good so will definitely take a look. I do think getting the perspective autistic adults is so key – I feel like I’m overloading myself with information at the moment, most of it from parents of autistic children, and while some of it is really helpful it can also be quite scary and bleak too! So important to remember that these little humans we worry about so much don’t understand why we’re worried most of the time! I certainly swing between feeling quite down to feeling really hopeful about what lies ahead. Definitely an emotional time but hoping that calms down a bit as time goes on.