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…
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.