The dark side of a ‘Label’ and Impact on families forced to use a ‘label’ to ‘signal’ invisible difference
I hope this article will be a thought provoking and interesting one for both professionals and parents and those affected with invisible difference. ‘Label’ may be a small word but it has huge consequences both for professionals and families. Let’s look at how professionals and families view the term ‘Label’ then perhaps decide on how useful or not the term is after all.
Embarking on a diagnostic pathway for invisible difference can only be likened to attempt to summit Everest without oxygen. It is a thankless task for those that are brave enough to go in search of their ‘identity/reasons for difference’ or indeed an explanation into the different world of a loved one. Families burdened with ‘label’s’ often get blamed, chastised, punished or investigated for merely using a term given to them by other professionals.
Negotiating Doctor’s, Professionals, Red Tape and Invisible Difference
Most visits to professionals are anxiety inducing, none more so than for someone suspected of being on the autism spectrum or another invisible difference. Many seeking help, support, answers and assessments are constantly met by a brick wall of unhelpfulness and frustration. I cannot emphasise that enough. You could be the first or perhaps the 41st professional many find themselves in front of, please remember that.
For most jelibeans asking for help is difficult at the best of times.
As parents we are confused by so many things. Friends and family tell us that our child's behaviour is 'just normal for their age', but do ALL children just eat one food, refuse to wear clothes and have meltdowns 5 times a day? Do all 'normally developing' children struggle to hold a pen, knife and have ritualistic repetitive ways that impede their lives? For parents it is 'not being sure', 'not knowing' that is the hardest part. None of want to admit that our child is 'difficult', 'challenging' or 'disruptive'.
By the time we have summonsed up the courage to contact someone to ask, we are already doubting ourselves. So when we are met by a professional who looks disapprovingly giving us the impression that its OUR fault, it can get a bit disheartening. Who are we? Just over anxious parents who should know better? That's how many may feel when they leave your offices.
So what is it that makes a professional a GREAT professional for us on the autism spectrum? What are we hoping for and looking for? Diagnosis? Support? Advice? Explanation? Or perhaps identity? Yes it could be as simple as that.
Or perhaps number 20! Yes really truly, we aren't making it up. You are just ONE of the many professionals we are asked to see or referred to you.
And if we have multiple children you could be the 50th appointment! WHO KNOWS!! We have lost count and please don't make us recall ALL of them! Some families have 5, 7 or even 12 children who present as jelibeans! The genetics are strong in many. Please try and put yourself in our shoes just for a minute, you probably couldn't cope with much longer. Imagine what it is like for US and OUR children. We live like this 24/7 not just the hour you see us for.
Please realise that we have recounted our story over and over, it is tiring, exhausting and not always pleasant for us to do, least of all in front of a red faced anxious jelijunior or jeliteen. Jelibean listen carefully to the children too, it is them who tell us they don't like being talked about constantly, often in negative terms. It really is not pleasant to have to hear it over and over again. After all how would YOU like it?
That's all, thank you for reading :)
PS We aren't making it up! According to recent research (Toth, 2008) it really is a ratio of 1:16 !