Invisible Conditions and Hidden Disabilities

I can no longer remember how many times I’ve heard the words “She doesn’t look disabled”.

Don’t even get me started on “She doesn’t look autistic”, what exactly do they think an autistic person looks like.

I’ve sometimes thrown that question back at people and they stand there, stunned and can’t answer.

As far as the disabled comment goes, it really bothers me.

My daughter walks. She doesn’t need a wheelchair, so people automatically assume she’s not really entitled to her blue badge and they stare and whisper or make ignorant and judgemental comments.

No, she’s not in a wheelchair, sorry about that. But she has some mobility issues, a lot of safety issues and she’s a child that has a condition that affects her emotions, thought and the space around her.

She’s autistic with moderate learning difficulties and these difficulties can impact her life greatly.

She’s easily lost without guidance and when sensory overload kicks in or anxiety, the ‘fight or flight’ often ends in flight regardless of surroundings, traffic, roads.

When her anxiety is in full swing, she often becomes limited with speech too and resists support and help.

So yeah, for those reasons and a few more, she has a blue badge. But for many members of the public, they visually expect to see a physical disability.

A total lack of awareness and understanding for autism and for all invisible conditions.

I’m quite a tolerant person but there are days I want to laminate copies of her DLA entitlement, risk assessments and her Occupational Therapy report and stick them in our car windows so before we get the “Well, she doesn’t look disabled” and “Well, there is clearly nothing wrong with her” comments, the public can read and educate themselves!

A lot of people don’t realise that you can apply for a blue badge for hidden disabilities and conditions, it’s a fairly new thing.

In some ways I understand why people react as they do when they see my daughter walking and looking very able.

It doesn’t mean their behavior and comments are acceptable mind, just that I can see why they think the way they do.

It’s frustrating that society can be so judgemental before knowing the facts.

The final thing I’ll add here is that to get a blue badge you have to provide a lot of reports, evidence, reasons.

You have to jump through hoops and go through a system that doesn’t always play fair and you have to prove how that invisible condition impacts daily life.

To the members of the public with their whispers, looks and judgey pants on – I promise you they don’t hand out blue badges or DLA easily.

We have to fight for everything! So please, try and learn more about invisible conditions and disabilities rather than looking at us as if we’re playing the system or faking it!

(This blog was originally one I’d written for )

Toilet Troubles and Continence Concerns

My daughter, Eliza, is autistic, diagnosed at age 3.

She’s struggled with various things during her life so far, one of the main ones being continence.

She was in pull ups until she was 7 because she just didn’t recognise the need or urge to go and use a toilet.

There were also added issues with her not liking small spaces (and let’s face it, toilet areas can be small, especially public ones) as well as fearing sitting on what she visually saw as ‘a hole’.

It just didn’t make sense to her and it caused anxiety.

We read books together, created social stories and she had apps on her iPad about toileting, but it still took a lot of patience, support and understanding and not pushing her too hard, allowing her to process things and go at her own pace.

So how did we do it? Other than the books and apps we had, I also used her favourite dolls and teddies and sat them on the toilet and potty to show her how it all worked.

I had a syringe full of water hidden up my sleeve which I squirted in to the loo so it looked like the doll had done a wee! She thought it was hilarious and it took away some of the anxiety as she could see that nothing scary happened, it was just a wee.

Eliza was getting closer to being confident to use the toilet and her understanding about it all was great, but I chose the time wisely to give her that last gentle nudge.

Christmas! She loves Christmas.

After speaking to our local children’s continence team and telling them my idea, I just went with it and hoped I knew my child as well as I thought I did.

I wrote Eliza a letter from Santa who told her that his wife, Mrs Claus, would be sending Eliza a special package this year.

She was so excited. I purchased a variety of underwear choices in her size, a pink padded toilet seat and put them in a box, added a letter from Mrs Claus that praised Eliza for learning about using the toilet and how Eliza was growing up so fast and that she’d sent Eliza this special delivery to help her with the final step.

Eliza thought this was wonderful and she tried her underwear straight away and has been dry ever since!

A lot of parents seem to panic when their child doesn’t use the toilet by age 3!

Why? Let them develop at their own pace and find their confidence to do these things.

The more pressure you add, the harder it will be.

Remember that some children might have hidden fears of small spaces and other things – lighting, ventilation noises, hand dryers.

And for autistic children, go at their pace and offer as much support and patience as possible.

Allow processing time. Allow mishaps and accidents and don’t get upset by them but give them encouragement and support.

Let them ask questions, watch apps, social stories – whatever works. Not all children will become continent, I’m aware of a lot of friend’s children that are still wearing adult nappies as teenagers and adults.

One of the saddest parts of this is the ignorance, mocking and stares from other people who don’t understand why someone isn’t ‘toilet trained’.

Because they don’t see hidden conditions or invisible disabilities, they simply judge.

Another issue I’ll highlight here comes from a friends Facebook status that I saw today.

Her adult son is autistic and needs care/supervision 24/7. They were out for lunch and she needed the toilet herself.

The disabled toilet was out of action (which she normally uses so she has him with her at all times) so she had no choice but to take him in to the ladies’ toilets with her as he can’t be left alone.

And yes it may not be ideal and you may think it’s inappropriate, but sometimes there really is no choice and we have to keep our children safe, even when we need a wee!!

(This blog was created for originally)