Invisible disabilities week 19-25th October 2014

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Sometimes it seems every week is another awareness week, or day.

The invisible disability is something I feel needs more understanding.
Whether that be PDA, ASD, ADHD, PTSD, Fibromyalgia, IBS… And countless more.

The way society views disability, actually disadvantages those with hidden disabilities, not only that, but also the negativity spouted about something people don’t understand is staggering.
People are more set to judge than wonder ‘what if?’

The hidden vs visible disability is something us parents of autistic children understand all too well. (And before the PC brigade come in… Yes my daughter is more than her autism as are the other wonderful people who just happen to have an autism diagnosis. But according to autistic people, they prefer to be called autistic people, it is as much a part of them as their other characteristics! So I shall listen to those whom I wrote about and address them as they prefer- and I know not all autistic people like to be referred to as such, but honestly I can’t please everyone and still get my point across!)
Some more classically autistic individuals do have the outward appearance of having special needs, and they have a visible disability.
Take a lad that we know, his mum even said that it is madness that her son and Dinky have the same condition- autism- yet can seem so different as he is 9 and has classic autism, he constantly moves his head, flaps his hands or clicks his fingers, is completely nonverbal and still in nappies. She recently. commented on the fact that while she was visiting the local inclusive play centre, she saw Dinky with her 1:1, dinky was having a meltdown and someone else said she was too big for tantrums. She talked to the staff and told them, the staff then talked to the other parent explaining Dinky is autistic and that she isn’t naughty, or tantruming. She told me that when her son has a meltdown people are much more understanding because everyone can see he has special needs.

We have this quite a lot when out, people tend to have a narrow view of autism. How can a 6 year old verbal girl have autism… Easily, try having a conversation with her and see how far you get. Put her in a group of children her age and watch her struggle to play. Leave her to play by herself with her iPad and listen to the ‘everything is awesome’ lego movie song on repeat while she lines up her lego keyrings or playing disney infinity and not being able to move past freezing things over and over again as if stuck on some kind of loop.

Autism is more than just verbal ability and self isolation. The triad includes difficulties with social interaction, social communication and repetitive and restricted behaviours and interests. Dinky has, what was remarked on as, moderate autism due to the level of difficulties she has in these ares.

People just don’t see it.

The PDA part of her autism is the most misunderstood. Only a few days ago I was on the phone to the disability living allowance people regarding her claim, it is very difficult to get them to understand that her avoidance is not a choice. Pathological means compelled to… She can’t help her avoidance, pathological also means ’caused by disease’. Obviously the medical world is blunt and unyielding, as is their terminology, however pathological is correct.
If there is one thing I do have some understanding of when it comes to Dinky’s PDA, it is the anxiety and avoidance. How? Because I have PTSD which is an anxiety disorder. The very reason for my PTSD I try and avoid talking about, thinking about doing anything about and that is part and parcel of the condition. Of course I can’t know how it feels for people to think what she is avoiding is silly, as most people would find avoiding the worst memories of their lives quite a sensible thing to avoid.
However trying to convey this to someone who works for a government agency is a little harder. It always sounds like an excuse for Dinky getting her own way… However they don’t live with the extreme that is PDA.

Another problem with a hidden disability is perception… (And I’m not immune to this issue!) Let me explain…

Dinky was referred to wheelchair services, initially it was for a special needs buggy, a Maclaren major. However Dinky was just over the 5 year old limit, and so she was prescribed this…

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To them it suits her needs. It has 4 wheels and fits her perfectly. Sorted.

I however wasn’t sure… It is very ‘medical’- meaning I felt very uncomfortable with the notion that others may think she can not walk at all. However if you’ve ever had to move an autistic child in meltdown who is refusing to move due the demand of walking, you may know why we need something on wheels to actually go anywhere!

So when Dinky did get out of it at soft play, I felt the people behind us gawping in disbelief, like it was a miracle. Heard others saying she shouldn’t have a wheelchair if she can walk, and other very ignorant things. When dinky had a meltdown on the way out of soft play people couldn’t understand why I wanted to get her in the wheelchair if she could run around and play. They couldn’t understand why this kid was kicking off. Apparently the word ‘Auty’ printed on her t-shirt wasn’t obvious enough as a link to autism. Another parent came over and told Dinky off for hitting me.

Right then I had my own mini meltdown, I cried (which I do not often do), and told them to leave us alone, that dinky is autistic.

Dinky at this point was hiding under a table, shaking and refusing to come out.

Later on that day I had my own hidden vs visible disability moment.
I was annoyed at the chair she had been given, had it been a special needs pushchair then there wouldn’t be as much negativity and ignorance about her walking and needing a set of wheels.

Then I saw a young person, maybe 13/14 with Downs Syndrome in the same chair, but a larger version, and it took a minute for it to click in my head that him having a visible disability, meant I knew he could probably walk but it was acceptable for him to use the same wheelchair I wanted to hand back… And then it hit me that it is society that understands visible disabilities more than hidden ones, as the level of acceptable (which is a societal concept), is what you can see. Looking at the two children using the same equipment is different as I am made to feel like a fraud for Dinky using the chair, for a hidden neurological condition, but a condition with a physical appearance is fine.

I still want to change the chair. Sure, I can grow a thicker skin like I have (mostly) with her Autism-PDA and people’s ignorance, when it comes to it, but for once it would be nice not to NEED to do so.
This is why I have a collection of ‘Auty not naughty’ clothing for her, because I feel the need to make it known she has a disability. Dinky may not always pay attention to what is going on around her, but she can feel the stares and negativity from others, as can I. It is so hard when people make the wrong assumption about your child. I love Dinky, and think she is utterly amazing, but for people to assume she is a brat, or that she is purposefully naughty… That hurts, they have made a split second decision about a wonderful child because of the uncontrollable aspects of her disability. (That is not to say she never just misbehaves like most 6 year olds, because she does… But she is not a naughty child.)

The other side of this is- when Dinky is in the chair and not getting out to run about at soft play, people treat her better, they avert their eyes when she rocks or is engaging in her vocal stimming- rather than staring and people are more polite and understanding in general. It is quite bizarre. As in the same town with out the chair on the same bus route at the same time she becomes a spectacle, a talking point and an annoyance for her rocking and vocal Stimming.

The difference a chair makes!

As a parent it is heartbreaking having a child with a hidden disability.
I have seen lots of ‘look past my disability to see my ability’ or hear people say people think their children are not able.
Dinky has the opposite problem, people expect too much from her, they don’t see her disability and only expect a level of ability she just doesn’t have because she has one aspect- verbal ability.

Because she can communicate verbally most of the time, people don’t see that her behaviour is also a form of communication. Especially when she finds it difficult to verbalise her thoughts, such as in times of high anxiety or stress. Then people wrongly assume that it is chosen behaviour.

Just because she is verbal doesn’t mean she understands what other people say to her, or even what she says half the time.
It also doesn’t mean she can communicate socially. It only means she can physically talk.

As always these posts don’t always flow or even make much sense, I blame the sleep derivation! But I hope I have shed some light on how it can be having a child with an invisible disability.

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11 thoughts on “Invisible disabilities week 19-25th October 2014

    • Im glad you think so as I’m forever worrying about upsetting people… Especially you Julia, as you know what it is like for Dinky, wheras for me it is guesswork… Although your blog has been a great help in understanding Dinky. X

      • It is difficult sometimes to write what you feel and not upset one or two people but you write so well and it always comes across as fair and well thought out. I think you’d have to go some to anger or upset me, or anyone else for that matter. You are polite and respectful and you call a spade a spade, which is a difficult thing to do. 😊 I have many written but unpublished posts, that will remain that way, because they are far too angry and I’m sure they would offend many! Lol. I can complete relate to what you have written, especially what you said about people expecting too much of Dinky because of her verbal skills. I often feel like that. People are so quick to judge based on what is right in front of them and it’s not fair. I’m continually having my fingers burnt and it hurts. I have to pay the price for other people’s mistakes and unfair expectations, like with my GP. I vowed a long time ago never to judge a book by it’s cover and hopefully I don’t do that but sadly so many others do, even those who should know better.

  1. I can relate to a lot of what you describe. I have a more or less visible disability (blindness) and various invisible disabilities that become somewhat visible sometimes. Like, when I was around fourteen my sister told me that I walked in a way that mad Epeople think I have an intellectual disability (I don’t).

    I can also relate to the issue about using mobility aids such as a wheelchiar or the like. I occasionally use a mobility cane and it makes me a bit self-conscious. The white cane does, too, but not in the same way, because I know people can see I’m visually impaired, and people can’t see I have difficulty walking.

    I also find that people attribute a lot of my difficulties to my blindness and then find it hard to believe I’m autistic, mentally ill, … That’s a drawback of having a visible disability in addition to invisible ones.

  2. It’s so important to highlight invisible disabilities, and I must admit since having a child (two even) with autism I am far less quick to make snap judgments about anyone.

    I am disturbed that you had a cut off point of 5 years for a MacLaren – My girl got one aged 6 and she is now 8 (and in age 9-10 clothes) and it still fits her very well. Aged 5 she could still fit into a regular buggy, albeit with a squeeze) so I am very disappointed that Dinky doesn’t have that choice. A buggy is definitely preferable for M, as she can insist on me draping a blanket over the sun shade thereby shielding her from shopping centre lights and bustle.

    I must admit I try very hard to ignore the stares of other people, but it’s not easy.

  3. I completely get your aversion to a brutally medical device like that wheelchair. We took our wheelchair to LegoLand recently and, although it is actually for my wife, Tinkerbell was the one sat in it most of the time (she has hypermobility and her legs were painful, apparently. You know how it goes). I was fully expecting strange looks and comments every time she leapt out of the chair to get on a ride – especially if we had jumped the queue by going in the wheelchair entrance – but actually, the staff there never batted an eyelid. They had clearly seen it all before and were perfectly happy to accept that a kid might have the energy to manage getting on and off a few rides but not for the long trek round the site.

    Tinkerbell often puts on her ear defenders in public; not because she wants to block out the noise but because the bright neon colours have the effect of making her invisible disability suddenly visible and, as you eloquently describe above, the people around are, almost magically, transformed into being much more accepting of her behaviour. It is a sad commentary on people’s complete lack of understanding of invisible disability that even a nine year-old with social communication difficulties and lack of empathy can clearly see the difference it makes.

    • Aww it does speak volumes like you say, when a 9-year old feels the need to make her invisable disabiltiy visable for others.
      Poor kiddo.
      I put dinky in the auty not naughty clothing for that reason- to make her disabiltiy more visable, she also likes wearing them, as it has drastically reduced the ammount of people who have felt the need to tell her off for having a meltdown or using her avoidance strategies!

      Legoland are normally very good with disability. As are the majority of the merlin group places.

  4. Thanks so much for this! My son has ADHD and sensory processing disorder. We’ve just come back from a day out where his behaviour drew lots of negative responses from the general public… nothing like judgemental strangers to ruin your afternoon!! So I came across your post after googling for invisible disability clothing, something with a slogan on it to give my boy a fighting chance when faced with such opinionated people. Is this an ok thing to do? Something along the lines of “I have ADHD, please show some patience” etc etc. Do you find the slogan clothing helps?

    • Hi, thanks for reading my post. It is so horrible when peoples ignorance ruins a day out x

      I have brought dinky some ‘auty not naughty’ t-shirts, hoodies, bags and 1 or 2 Autism/special needs t-shirts over the last couple of years.
      I feel that the world would see our children differently if they had an outwardly visible disability.
      So Slogan T-Shirts I feel are the only way of making the invisible- visible!
      Check E-bay for adhd awareness clothing. There will always be people who say that you are making the child’s disability stand out and making an issue of it… BUT, what is more of an issue… An ignorant adult making false assumptions or a child wearing a t-shirt making people aware their behaviour is not always in their control and that they may struggle for another reason other than being ‘naughty’.

      I don’t like the confrontational ones, as I feel there is no need to go to extremes, but I have seen some really good slogan clothing out there.

      • Yep, I’ll def avoid the confrontational stuff. I don’t want to label him but it breaks my heart when people won’t cut him a little slack. I’m off to look on eBay!!
        Thanks again for your post! It’s just so sad that people are so quick to make judgements. Hx

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