When my youngest got his autism/ADHD diagnosis it made me rethink everything I thought I knew - not so much about my son, I met him every day and accepted him as he is from the moment he was born. But more a self realisation about who I am.
Which wasn't so much about knowing who I am, because I live with myself every day, and I try to accept who I am; but has more to do with understanding everyone else and my relationship with them. Because, really, we can't know who we are in isolation, I can only know myself by understanding others.
So when my son got his diagnosis and I realised that autism also fitted with me - it suddenly opened up the possibility of understanding others as neurotypical and therefore different from me. It allowed the possibility to understand why others were often so strange in relation to me - because our brains are wired differently.
Today it is official. I am autistic. I decided that I wanted to find out once and for all and not just assume it myself. It turns out I am linguistically gifted and this is why it has probably been hard for others to ever assume that I am autistic, it has also been a way of coping, or masking.
The drive to belong is strong.
And since the world is driven by neurotypical norms to belong means becoming bi-lingual, so being linguistically gifted comes in handy. I have learned to not only speak autistic but neurotypical too. I have relied on others to do this, so if I am with a shy or quiet person I will mirror that, unless there is something I am passionate about to talk about - which I can nerd about for hours, as many people who have met me will know. The risk of masking though is that you lose a sense of self. It is a convenient tool that allows you to belong, but at the same time there is a sense of not really belonging, because it is another version of the self that has been included and not the true me.
To be honest, I think many of these identities I have had over the years has formed who I am and are probably so ingrained now that they are a part of me. But I also look at the identities I have needed to shed over the years - being around gossiping, negative people is not a good thing for me as I start to mirror that, and it pulls me down into depression. So I realise I have to be picky about the people I have in my life, where I work and who I interact with for long periods of time.
This knowledge helps me to stay true to myself. To be able to enjoy being social, because I do love it, by planning in down time to recombobulate. To keep the negative gossipy kind of people at a distance. To avoid watching sports (oh I am so competitive, but I really dislike the feeling of stress that comes with the competition - so totally exhausting. I don't mind losing, whether watching or playing, but the tension just before the result...!!!!!!!! ). I think about how I need to structure my days, and make plans so that I can be brave and flexible.
I look at my childhood and youth and wish that I had received my diagnosis earlier to be able know myself earlier. But back then such diagnoses were much more problematic as they were filled with shame for the family. I am so grateful that things are changing and that there is a growing acceptance for autistic people - there is still lots of discrimination, there are some horrendous things that are still happening to many autistic children who are forced to endure treatments to "cure" them.
When one of my daughter's got her diagnosis the doctor said how great it was for her to be in such an understanding family that helped with strategies and that she would "grow out of her autism" - I looked at the doctor shocked and reminded the doctor that she would not grow out of the autism, but that she would learn strategies so that people like her (the NT doctor) would not notice them. If even the doctors who are supposed to be the experts don't understand it, then there is a serious need for a better education, not just for doctors, but society as a whole.
For example, aspergers is named after the German Nazi who tested and tortured people with autism to be able to make such a label. It has been the request of the autistic community for decades not to be connected to a Nazi who tortured members of our own community in this way. Eventually this was acknowledged and the term was removed from the updated psychology diagnostic books. So when my son got his diagnosis it was autism 1 not aspergers. Five years later when my daughter got her diagnosis it was called aspergers again. I asked why. Apparently the neurotypical world found it too tricky to comprehend autism 1. Five years later when I questioned the Autism and Asperger Society here in Sweden about their choice of name they informed me that they are going to drop the asperger part. I am still waiting for that to happen at the end of this year. I know some people that are comfortable with the term asperger for their diagnosis - because that is the identity they have been given by the doctor, and being autistic does mean we struggle with flexibility. Non of my children, or myself want to be identified with this term, I feel uncomfortable with the fact that this knowledge came from the pain of others who were denied integrity, choice or any sense of well-being. But, I also understand why some might need to cling to the term - I think this is why it is so important that the doctors stop using the term to diagnose people.
I also choose identity first over person first. In my book Original Learning Approach I explain this
"When discussing a person’s disability or diagnosis, person-first language puts a person before their diagnosis, as in “a person with autism.” Identity-first language leads with the person’s diagnosis: “an autistic person.” Person-first language arose as speakers wished to ensure that people’s identities were not tied to negative views of disability, but this language also treats a diagnosis like a disease. Likewise problems arise if a person is defined solely by their disability, especially when some people’s views are based on negative stereotypes. Today, the blind, Deaf, and autistic communities see their disability as a permanent and important part of their identity and therefore choose identity- first language. It is important to ask what each individual prefers and use that terminology when talking with them. In this book, I use identity-first language as that is my preference as well as the preference of my children, but none of us are offended if person-first terms are used."
My opinion is that we need to change people's perspective of autism and not see this as something negative and to be ashamed of, but simply as part of the diversity of life. I don't carry my autism around like an accessory, it is a part of my identity, and therefore being autistic rather than being with autism feels a more natural way to phrase it for me. In the end I do find it fascinating how much we need others to know who we are. It's almost as if we cannot truly be ourselves alone, we need the interaction to know how we respond, how we think, and to know the options of who we can be.
Role-models are important. But this means the opposite also is.
And when we are working with young children need to always be thinking about what our own actions are communicating - care, inspiration, limits, negativity etc. I always noticed how in children's play I could hear my own voice in the utterances of the children - and every once in a while I would wince as it didn't sound good - but it did give me the chance to adjust and improve the way I interacted with the world (instead of telling children off for using the terms and tones of adults - which I think happens more than it should). We also need to break down normative views of play, learning, interacting, communicating and see the multiplicity of these - so that the neurotypicals can start to learn how to speak autistic and not just relying or forcing autistic people to do all the work.
I realise after posting this that I needed to add a little extra... why is it that autism, ADHD etc are always seen in the light of a deficit? When reading my official statement of my diagnosis it is a long list of what i am not good at... what about all the things that my autism allows me to pick up on that neurotypicals miss? For example being able to see the whole and incredible detail at the same time. Being able to recollect how things felt from my childhood (which has come in extremely handy as an early years teacher - it's not just remembering how they felt, I re-feel it, so it's like gaining a deep understanding of the reactions of children). That it has to be seen as a disfunction or disability is a reflection of the neurotypical ableist world that we exist in - if the world viewed everything as acceptable diversity maybe how society functioned would be more inclusive and more able to focus on the abilities of everyone in such a way it becomes less problematic. Because really much of what I have struggled with, and my children too, is trying to fit into the neurotypical template and failing. And that list of what I can't do - are all things that belong to that template.