Diagnosis or label?

When we first started out on our autism journey several years ago diagnosing was not something I ever really thought about or questioned. To me it was simple, if there is an issue, you go to the Dr and if there is a problem they diagnose it.  Oh how things change. It would seem in the case of autism (and the many co morbids that go alongside it) that diagnosis is not that simple.  Now don't get me wrong, autism is a complex condition that presents in many ways and diagnosing it, especially in higher functioning children or those with aspergers is not that simple especially when children are younger.  

The issue that I have here is the terms used by so many people, many people, including professionals, seem to have an issue with the word diagnosis when it comes to autism and other related conditions. People constantly refer to it as labelling! From the age of around 2 when autism was first mentioned (roughly 6 months after Isaac was initially referred) as a possible explanation for Isaacs difficulties the same phrase was used at the majority of his appointments; "We don't like to label children." At the time I didn't really give it a lot of thought as we were going through the diagnosis process which in itself took over 2 years.  I remember an early support worker going into Isaacs nursery, after she had spent some time with Isaac she then met with me and told me that he did display some definite problems within the triad of impairments. I asked her if in her opinion he had autism.  Her response to me was to ask me why I was so keen to label my child.  That response hit hard, at the time I had lots of thoughts spinning around in my head, I had always known from very young that Isaac was not like my other 3, he was different in every way. All children are different and my older 3 are all completely different from each other, but Isaac was different in so many ways.  If I'm honest, her response upset me a lot, after all, why was I pursuing this 'label' for my child?  By this point we had been under the care of paediatricians and various other professionals for around 2 years (since Isaac was 18 months old) and we had been given so many conflicting opinions which I have detailed in an earlier post. At this point I thought that maybe I should just drop it, after all, all it was succeeding in doing was upsetting me and starting to take over my life. I analysed everything Isaac did, the way he played, the way he spoke, his lack of eye contact, his stimming, he quirky little ways. Maybe it was just how he was and there was no need for a 'label'.

Even though I was being told at this point from most of those involved that there was no need to label children and it served no purpose and also that whilst Isaac ticked lots of different boxes for lots of different conditions, he didn't at that point tick every single box for any one condition.  Now to me that meant that there were definite issues in several areas but to the professionals involved it meant they didn't have definite evidence pointing to any one thing as an overarching diagnosis and that meant no diagnosis.  Eventually after several more months and me becoming more and more stressed and therefore more and more stroppy and probably not endearing myself to any of those involved with Isaac I asked for a second opinion. Isaac was seen and the diagnosis was made that day.  Still though we had the issue of the term 'label' with the paediatrician who diagnosed him asking me whether I thought a label would be helpful.  Again, at that point I think I made my feelings very clear.

 This is Isaac. Isaac loves cuddly toys, he likes spongebob, lights, buses, trains, the list goes on. He doesn't carry a label around with him that says 'Autistic' He is simply Isaac.  So when I hear others refer to him as being labelled, my response (which depends on my mood and how much sleep I have had) varies. At times I smile sweetly and bite my lip, at other times I explain in no uncertain terms that he is not an item of clothing,nor is he a can of soup, he does not have a label, he has a diagnosis. His diagnosis, unlike a label, does not tell anyone all about him, labels are impersonal and imply that each item carrying the same label is the same and requires the same care. Isaacs diagnosis of autism does not tell us that every child who carries the same diagnosis as him is the same.  He is still Isaac, he may have the same diagnosis as several of the children in his school but his personality and the care he requires are very different. Unlike some children with autism Isaac is very tactile, he loves hugs and holding my hand, he loves to lay next to me and have me stroke his back or his arm, he craves touch, yes he shares traits with other children with the same diagnosis but that does not make him the same.  My argument to those who call it a label or accuse me of labelling my child is this; Isaacs diagnosis (not label) gives an explanation for the difficulties that he faces and presents with. You would not say to a parent of a child with a condition such as cerebal palsy or Down Syndrome that they are labelling their child so why is it different for autism.  Whether or not a diagnosis is made, the difficulties the individual child presents with are still the same, you do not make them worse by diagnosing and they do not disappear if a diagnosis is not made. In short, nothing changes, diagnosis or not. Isaac is the same child he would be whether I had fought for the diagnosis  or not. The only difference is that with the diagnosis Isaac has access to much more appropriate schooling.

In life we all carry labels around with us, whether we are funny, happy, fat, thin, ginger (obviously me lol) etc etc. Pre diagnosis Isaac was referred to as odd, hyperactive, a loner, naughty, disobedient, stubborn (the list goes on), so for those of you (including any professionals) who still see autism as a label I would urge you to rethink.  I actually find it very insulting when someone refers to Isaac as being labelled. His autism IS part of who he is but it does not define who he is. Even if after reading this you still feel that the term labelling is appropriate then I would still rather him have a 'label' of autism than some of the less complimentary ones he had pre diagnosis.