What a difference a diagnosis makes

When Eliza was diagnosed with autism, it was a relief. A relief because I knew she was autistic anyway but that single piece of paper with her diagnosis on was a key, a key to open the way to the specialist education, therapies and interventions that she needed. She was only 3 years old but early intervention is so important although not always available and the sadness and reality these days is that support services are being cut daily and budgets slashed so many children are now being forced to wait years for an appointment let alone a diagnosis. I know she was diagnosed at the ‘right’ time both personally and when all the services she needed were at our disposal. We were some of the lucky ones before the SEND crisis started spiralling out of control. The reality these days is that children and adults are being failed. They are left to wait, made to fit in, expected to adapt without support and this is damaging.

37992268_10156304444495985_6937541694044766208_n

 

When Eliza was diagnosed, she had already been using Makaton sign language and began using PECS (Picture Exchange Communication System) to aid her communication. Her favourite word was ‘no’ which she could speak and sign perfectly! But when out in public, strangers would often stop and chat in the supermarket queue and many quickly judged Eliza for not replying to them, assuming she was rude. Often when I explained that she had very limited speech and was autistic and needed time to process things, we’d get replies including “She’s just trying it on, she’s fooling you”, “Oh but she’s a girl, she can’t be autistic” and “I’d not put up with that, I’d have her talking by the end of the day….”. Often Eliza would reach for the PECS cards I carried in my pocket or on her bag and point to pictures of what she wanted or what she’d seen. She was communicating yet the sight of these picture cards used to make people turn away and whisper, some would just stare at her and loudly ask “Can’t she speak then?” which would then send a lot of eyes towards our direction and often lots of sympathetic head shakes. The reality is that a lot of people do not understand autism, communication aids and or anything that they don’t see as the ‘norm’ and when they see a child or adult that is different, attitudes are usually ignorance or pity.

When Eliza was diagnosed, we lost contact with a lot of friends and even some family over the following couple of years. The child that had been attending parties and play dates was suddenly left out, despite the fact she’d never been anyone or anything different to the beautiful and funny girl she always had been. But diagnosis somehow made a difference. Suddenly Eliza wasn’t Eliza anymore to them. She was ‘the different one’ or ‘the autistic one’. Whether through ignorance or lack of understanding we were excluded. Eliza was excluded. Some family didn’t understand (some didn’t want to try to either) and we were given the “She’ll grow out of it, you’ll see” and “You read about this in the papers, parents getting their children labelled so they can claim extra money”. YES THAT ACTUALLY WAS SAID TO US! Family seems to assume that as they are family, they can say whatever they like without repercussions. Just because we are related doesn’t give you any right to be rude, ignorant and judgemental. The reality is that everyone has their own expectations of what is ‘normal’ yet many don’t wish to understand or at least try to realise that, actually, Eliza is perfectly normal thank you very much. She’s just different in the way her mind works. A diagnosis opened some doors for her regarding therapy and school but it also closed some with friendships and relationships.

When Eliza was diagnosed, it didn’t stop her doing any of the following –

  • Making friends and maintaining those friendships.
  • Learning to swim.
  • Reading at a level 2 years above her own age.
  • Taking control of her own anxiety and facing her fears of being in theatres, cinemas and restaurants.
  • Learning to play a brass horn and also learning piano.
  • Telling awful made up jokes about farts and burps.
  • Becoming an Ambassador for an Autism Awareness & Acceptance clothing line Just Ausome
  • Being asked by Chewigem to review and share feedback about their products.
  • BEING ELIZA, BEING DIFFERENT AND NOT LESS!!

81SKtsv+jUL._SX700_

Thanks for reading. This was a prompt about ‘A reality I’d like to change is…’ from ‘Finish the sentence Friday’ hosted by Finding Ninee and Sporadically Yours

 

 

10 thoughts on “What a difference a diagnosis makes”

  1. I got the whole ‘everyone just wants a label’ crap when we got our diagnosis. I wanted the diagnosis for the fact it opened up avenues of support we couldn’t get without it. I’ve developed a lot thicker skin over the last year x

    Liked by 1 person

  2. UGH to your own family telling you you just want a label. I actually DID want a label at one point but ONLY to know what the heck was going on with Tucker. He wasn’t talking, and his developmental pediatrician didn’t want to give him the autism label, although he was going to autism preschool. Anyway. People SUCK. Eliza doesn’t. And you’re an amazing mum. <— see I even spelled it all UK for ya. xo

    Liked by 1 person

  3. Yeahhhh, labels…sigh. Now I’ve got Depeche Mode “People are People “ in my head. So that’s good.
    But, back to this, it IS amazing what our family has said over the years too. I’ve even had one family member tell me my son will grow out of Down syndrome. Ummm, no, that’s not really how that works. (Sigh again)
    I think I’ll go back to my happy place and hum more Depeche Mode. 🙂

    Liked by 1 person

  4. I can imagine that relief in a diagnosis. It opens doors and answers questions your mama heart already knew.
    The things people say.. never fail to astound me. Sheesh!

    Liked by 1 person

  5. Just wow to those grocery market strangers comments! I know it made you feel a million times better getting a diagnosis but I hate that some people need proof aka (a diagnosis) and them that proof led to being dismissed in a way that was probably worse than not knowing what was wrong.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s