There’s this argument I keep having online. Argument is a bit of a strong word, I suppose…but I always end up drawn in to answering a common question. People often disagree with me and although I can see their point of view I still put my point across. So that’s kind of arguing, right?
The question that draws me in is:
“I think my child is (insert label here) shall I get him/her diagnosed? Should I label my child?”
And my answer is always yes. Shall I explain why? At least this way when I start to get drawn into these online debates I could just cut and paste this blog post in and go make tea instead…that way my poor labelled kiddies won’t starve to actual death.
For me to answer this question I have to go back in time. I have to go back about eight years to when I had Elizabeth and Imogen and I lived in Bolton with Paul.
I got pregnant with Imogen when Elizabeth was just six months old. She was my first baby and I hadn’t noticed that she was any different to any other kid, really. With hindsight she was VERY different. Having three more kids has shown me that. But I just didn’t realise that her behaviour wasn’t ‘normal’. Go on, I’ll list some of her little quirks at six to twelve months:
- Easily overwhelmed by noise/people/busy places resulting in screaming
- Gagging on Stage 2 baby food even when she should have been eating solids (First baby, I did baby food in jars then I hadn’t even heard of baby-led weaning)
- Refused to nap, wasn’t tired.
- Did not want to sit on my knee
- If hurt would ask for her teddy rather than come to me or another person
- Attended nursery two days a week and whilst there refused all food, milk and water. Refused sleep and would not cry when she had dirtied her nappy so she would get terrible nappy rash
- If upset would go quieter and quieter until eventually she would start screaming and be totally inconsolable
I have to say that these things make her sound like she was a difficult baby but she wasn’t really. I just learned that she didn’t like busy places and took her out of nursery. We found a lovely child minder instead and whilst things were not brilliant with her, I just took the view that it was only two days.
Elizabeth was a quiet child who had a brilliant grasp of language from very early on and so we had lots of chats and generally she did very well. She liked to play alone particularly enjoying reading with me, jigsaws and play food picnics which she would set up ‘just so’ for all her teddies to eat. She loved Peppa Pig and played for hours setting up the house and the cars etc so that everything was in order. I didn’t notice that this was all a little bit OCD!
When I gave birth to Imogen things changed. BIG TIME. My friend looked after Elizabeth whilst I was in labour and she came back to a new baby and BAM! She changed. This wall came down. It wasn’t even an outside wall between her and us, it was almost inside of HER.
I have a picture of her. I don’t know if you will see what I see in the picture because she’s not your child but here it is anyway:
I don’t know if you can see it but there’s a sadness. A lost look there. She just gradually closed herself off. I was totally beside myself. If I had tried to join that tea party she would have walked away from it.
See her here?
I have my arm around her but there she is, all rigid and unsmiling. And there I am starting with Post Natal Depression. By the time Imogen was six months old Elizabeth was throwing herself on the floor twenty times a day screaming and was pushing Imogen down, hurting her. I couldn’t leave the room because if I did Imogen would be screaming with scratch marks and pinch marks on her. I bought all the books, did ‘time out’ and praise and sticker charts and sitting on the step…you name it, I tried it. I contacted the Health Visiting Service who didn’t come out until it suited them…but I think she realised I was struggling and a woman from I don’t know which service came to see Elizabeth and I. I *think* she was one of those behaviour support workers or something but I was in such a state I’ve no idea. She chatted to Elizabeth and had her drawing circles on paper and stacking cups and at the end of the interview told me that she thought that there was nothing wrong with Elizabeth apart from the fact that she and I were a ‘bad fit’. She used those words.
By the time Paul came home that night I’d been crying about three hours. That night we diagnosed Elizabeth ourselves by doing questionnaires online until something sounded right: Aspergers. It took three more years to get an official diagnosis and proper support for us both. Until that point I got the best support on Facebook groups.
So what’s in a label then?
Well a label tells a parent:
- they are not a ‘bad fit’
- they are not a bad parent
It tells that parent that they need to find a different book to work out their kid because poor Elizabeth didn’t know why she was being put in time out. She didn’t understand praise and punishment, rewards and star charts. What I needed to do was understand the way her little brain was working. I needed to know the name of her ‘difference’ to give me something to ‘Google’, something to type in Facebook and Amazon because I was trying to understand someone who’s brain works completely differently to my own. Understanding that there was nothing wrong with Elizabeth apart from ‘different’ and what that ‘different’ was enabled me to also understand that it wasn’t my fault! Elizabeth looked sad but actually she wasn’t sad, she had closed herself off because she was processing a big change in her life. I could stop blaming myself for having another baby when Elizabeth was still a baby herself and stop thinking that my inability to make her behave like all the other kids was my fault because I wasn’t doing anything wrong! Any other mother would have struggled! It wasn’t me!
A toddler group ‘friend’ of mine once confided in me that I should hug Elizabeth more because people had assumed I loved Imogen more than Elizabeth due to my kissing and hugging her and not Elizabeth. I tried to explain that Elizabeth really didn’t want or need this physical contact and that we had signs that we used to be demonstrative (thumbs up means I’m proud of you, for example) but she didn’t believe me! I would have loved to have been able to say that she had Aspergers and tell her to go look it up, but Elizabeth didn’t have a label then.
When Elizabeth went to Nursery (preschool, not daycare) they found that she had different needs to the other children. She had an IEP but due to my understanding of her by this point I was able to give them help with her behaviour:
- Elizabeth didn’t respond to the bell and line up with the other children, she had to be called by name
- Elizabeth needed a five, three and one minute warning before the end of an activity or else she became violent and screaming
- Elizabeth needed to sit on the edge of the carpet near her key worker because she couldn’t cope with the close proximity of the other children
- Elizabeth had a strong need for things to be the same. As an example when she was doing rehearsals for the Christmas songs she had to have the same bells each time or she was very upset.
The Nursery expected Elizabeth to make progress. She didn’t, because she couldn’t. Elizabeth is ten years old now and of course she has progressed wildly from the point she was at at two years old! But I still have to call her by name or she assumes I am not talking to her. She still needs warning before the end of an activity but she can tell the time now, so she looks after this herself. Elizabeth still likes things to be the same, it gives her a sense of stability. We don’t go on holiday because she is extremely disregulated/excited/upset that things just aren’t the same!
All of this stuff might have made Elizabeth feel pretty bad about herself and her ‘inadequacies’. She is really really rubbish at being neurotypical. If I constantly tried to make her something she wasn’t she would be failing every single day and I never wanted that for her, so we don’t do it. If the world was full of Aspies and there were just a few neurotypicals the world would be a very different place. It would be calm, tidy and quiet for a start! But seriously, I would then be ‘weird’. I would be the one who was trying to constantly change myself to fit in. Isn’t it better to just acknowledge difference and embrace it rather than expecting everyone to conform to the ‘norm’? The typical majority? If there was a cure for Aspergers I wouldn’t give it to her because I don’t want her to change. I have changed her diet, we exclude dairy and wheat but this isn’t to cure her Aspergers, rather it helps with her anxiety which is a negative co-morbid of Aspergers and HFA.
Labels are interesting to me. When you label people they do something clever: they find each other and they find an identity. They find common ground and they celebrate their difference. Together they bond, together they make a larger whole. Elizabeth is one person. She is the only person in our house with Aspergers. She is the only person on our street with Aspergers (I think) yet because she has a name for her difference she has been able to discover all the famous people who have lived who share the same label as her! These include the likes of Bill Gates, Michael Palin, Alfred Hitchcock, Isaac Newton, Jane Austen, Albert Einstein… the list goes on and on! She is proud to share Aspie traits with these geniuses. She is part of an Aspergers group, she has Aspie diagnosed friends in the real world and online. She has an identity as Elizabeth Bridge and she has an identity as a young person with Aspergers Syndrome. She is proud of the label and I am proud of her.
If we had diagnosed Elizabeth and labelled her and then derided her differences I would say that the label would have been damaging. However to us, the label has only empowered us. It provided us with a key to understanding her and her with her own ‘tribe’. She is no longer an oddity, alone and different, she is part of a worldwide network of empowered and successful people who just have a different operating system.
And that’s why labels are useful and positive. So there!