The Diagnosis. The Label. The Relief.
I wrote this post on Social Media two years ago. About a month after my youngest child received his Autism diagnosis. My middle child received her diagnosis 6 months later. Reading back over it today, there are some changes I would make to my wording, things I didn't really understand. The relief though, of being heard, I was so grateful. Since then, things have improved, others have regressed, things have changed and things have stayed the same.
Here is what I wrote back then:
" A U T I S M
For years I’ve been told my kids challenging behaviour was “lack of discipline”, told that I was exaggerating how full on they can be.
For years I have been seeking someone who would listen (finally found that someone last year!) and getting fobbed off.
Years of feeling embarrassed and judged by anyone and everyone who has witnessed their meltdowns, not knowing that that’s what it was.
Years of not being able to duck into the supermarket for “just that one thing” real quick with the kids because every single time it ends in tears and screaming and stares.
Not being able to take Dexter to watch his sister compete at cheer comps because he was an absolute nightmare that one time that I did take him.
Having to decline invitations to go out in public because the sheer thought of taking them out sent anxiety screeching through my body.
Feeling like a complete failure when I’m told “oh they were so well behaved”, then the minute they see me those well behaved children disappear.
Feeling like a over the top nuisance when talking to their teachers because they don’t experience the things I do.
Feeling guilty and like a totally rubbish mum to my amazing 13yo who I don’t give enough of my time and attention to, because I’m so exhausted and run down all the time (even though I love her more than she could ever even imagine).
About a month ago, we finally got an official diagnosis for Dexter. Autism. Hello.
I don’t give a hoot about the “label”, but the label gives us access to resources and services that I didn’t even know were out there. The label means the professionals will listen. The label means I know what to research and can advocate better for my children. The label reminds me to have more patience, they’re not being assholes for the sake of it, they just aren’t coping.
Phoenix is possibly also on the spectrum, we’re still looking into that.
We are learning. I am learning. This is a whole new world for us."
I realise now that saying my son was a nightmare was incorrect, but that is how I felt at the time. I didn't realise the extent that he was struggling, that he just couldn't cope in that environment. I know better now, I do better now.
Trips to the supermarket are getting easier, public outings are getting easier, ignoring judgement is easier. I know my kids better now, I am constantly learning from them. I can tell when they have had enough more often than not, I make allowances, my patience has grown, I choose outings carefully - we don't go at peak times, we try to be prepared and I try to let them know what to expect in advance, we leave when we need to.
Last week, we went to the swimming pool, the kids had begged me for hours. It was Thursday, early afternoon. We drove 20 minutes to get there. It wasn't busy, it was actually pretty quiet. We stayed 15 minutes before my son declared he was ready to leave. So we gathered our things and we drove the 20 minutes home. It was fine, I was fine, they were fine. I didn't get upset that we had driven all that way for such a short time. I didn't get upset that I'd wasted money. We got out of the house together, and progression is better than nothing at all.
Their behaviour is still challenging, but as they get older, their behaviours are changing, their struggles are changing, THEY are changing.
We welcome the "label", we embrace it. Two of my children are Autistic. They know it, I know it, we are not ashamed of it. They are amazing people, they are quirky, they see things in ways that others don't. The "label" gave us access to support that we, as a family, would otherwise not qualify for.
In saying this, I, we, do not speak for everyone. Everyone takes this journey at different paces, this is our experience.
Until next time,