I think this is a very personal opinion and your view will completely depend on the journey you have taken. However, for me, I was incredibly grateful for that label, even though, at the time, it truly broke me.
Deep down, I knew from the moment Aiden was born that there was something different about him. As he grew that difference became more apparent and it felt like I spent my life making excuses for him.
‘Sorry, He’s just tired’
‘Sorry, I don’t think he heard you’
‘Sorry, he doesn’t understand’
These excuses changed after my acceptance, to:
‘That’s just Aiden!’
‘In Aidens world it works like this…’
‘Aiden just has his own set of rules’
The hardest part was trying to justify everything he did or we did because of his behaviours. Really what I was trying to do, was gain acceptance from others. Without a diagnosis we had no answers or reasons for his or our behaviour towards him and more importantly, we had no guidance as to whether what we were doing was right.
His label of Autism felt like a massive relief! A relief that I wasn’t going mad, a relief that there was a reason to his extremely difficult behaviour, a relief that there was a reason for his differences. It was also a relief to know that I could now learn to understand him and that ultimately, I could learn how to help him.
However, with relief also came an abundance of guilt and grief. (Which has never gone!)
Guilt – what did I do to cause this? Also, guilt about how I’ve dealt with his behaviours up till that point – maybe if I had responded differently, I wouldn’t have caused him so much distress.
And grief! Well this is complex, because nobody has died. However, the feeling you get after retaliation sets in, that your child and your relationship with your child is never going to be the one you had planned and it is said to be the same feeling as grief!
These feelings then create a cycle which leads back round to guilt again! You feel guilty for feeling like that! ‘I just wanted a ‘normal’ child!’ You envy others with their ‘perfect’ children – because they have the life you had planned! That doesn’t mean you don’t love your child (on the contrary, I think I love him even more!) but you grief for that something that you never had and will never get and feel guilty for even thinking it!
But without that label I think I would have gone mad. I would not have known where to start with helping to support his needs because according to society he didn’t have needs and I would not of been able to grow in my ability to understand him.
It is easy to be caught up in the negativity that surrounds a so called ‘naughty’ child and it is easy to forget how this negativity affects not only their, but your self-esteem.
Professionals say you don’t need a label to access support! That is utter nonsense! Without that label Aiden was a ‘naughty’ school boy struggling to fit in to a mainstream school. I was a bad parent and I was ousted by other parents within my community.
With that label Aiden became a complex little boy who needed specialist provision. He was given access to therapies and social support to enable him to fulfil his life ambitions and to achieve an education and future he deserves. Other people had a name for his behaviour (I won’t say they understood) but with that label their was a degree of acceptance because there was a reason for his behaviour.
BY SEND MUMMY BLOG