living with a label - it doesn't get any easier

This is the part that really sucks, The part no-one sees, The part that we're told is imaginary.

I travel this road every day with my family, facing the secret society, the taboo topic that can't and won't be mentioned or acknowledged.

Yet it 'is' a reality to so many, made even more difficult when fronted by a world that just doesn't 'get it'.  

-Medically-Physically-Psychologically-

Let's face it, anything that makes us look or seem any way different to what the 'norm' should be, is like a red flag to a bull, most can't help but judge and criticise what they don't understand.

For us personally, we have traveled this path for over 7 years, since A.J. first received his ASD diagnosis, and the start of understanding what that really meant.

Sometimes it seems we have come a long way, seeing A.J. progressing so well, and then other times I see almost a decline/regression in his actions and mannerisms leaving us to worry so much, as to how he will cope in the real world.

It's not the Autism that causes many issues,

it's usually the co-morbid conditions, anxiety, sensory sensitivities, and his OCD that takes over.

  

Seeing him struggle day after day just to maintain what others state is a 'normal daily routine' is so stressful.

His anxiety holding him back as he over-analyses everything before being able to gain confidence to attempt anything, then his OCD begins a ritual of things that 'have to be done' in a set routine and organised order before the day can actually start.

A.J. wants to fit in, he wants to socialise although his lack of confidence and understanding of the basic social cues leaves him embarrassed to attempt the first steps. 

But why should he 'fit in' in a way that suits others. By doing that he isn't being true to himself.

His personality and originality is what makes him who he is.  

He should have the chance to express himself his way, to explore the things that are important to him.

To fit in he has to hold back all that makes him 'him', this takes energy, focus, control, leaving nothing left for what he is supposed to do.

The result is he easily becomes distracted, disconnected, disoriented, when expected to 'blend in' he is unable to cope.

Others not knowing or understanding the resulting warning signs of an imminent 'meltdown' will question why all of a sudden he has this dramatic mood change whereas he reverts inside himself unable to communicate to others, or express in any manner how he feels or why.

As A.J. states - this is his 'existential crisis' moment, it begins every morning as he is almost frozen unable to begin the day while his mind takes over with the stresses and worries about what may be happening around him, and how that may affect him directly.

Over-analysing his purpose and existence, what his accomplishments should and may be, what he will become, and how to determine if he has taken the right direction that will truly benefit him and his future development.

So much consumes his every waking moment, all the needs and demands of each and every day, a simple action for others, yet for A.J. it becomes his focal point, draining him totally.

….this  takes me back to where we began and how I tried then to explain what it was like for him….

How do you explain the way his Brain works?      Or doesn’t work!

How do you explain to someone that the most basic of nature’s beauty, seen by others as insignificant, can cause day-to-day, minute-to-minute extreme experiences, the most unexplainable, intense feelings, emotions, and heightened senses.

 How the most glorious rays of light beaming colourful hues through the window, sneaking its way onto the desk he’s sitting at can be the most painfully, intimidating and frightening thing he had ever seen!

How the softest of clothing can ‘tear away at his skin’; socks can ‘wrinkle’ his feet; layers of clothing ‘burning him’, the noise of children singing or playing games, calling to each other can cause a drilling type pain he can’t explain.

A visit to the shopping centre with squeaking trolleys, flickering lights, strange smells wafting through the aisles, the hustle and bustle of different people trying to rush past him; all this can be more stressful and painful than anyone could ever imagine or understand.

Don’t be upset if it seems he’s ignoring you, it’s his way of ‘locking out reality’ enabling him to cope with the effects of the sensory overload he experienced from the surrounding environment.

Trying to explain all this to others, in a ‘socially’ acceptable manner, how something so simple, mention-less and un-noticed to us, could be the cause of that major ‘meltdown’ you had just witnessed.

No, he’s not a brat; he can’t have it disciplined out of him!

His brain function doesn’t work the same as ours!

At times it’s been hard for me to understand also, I just know he has no control and can’t help what he does or says; 

………………………………………that’s what Autism is!!!!!