The first time I experienced Autism Awareness Month, as the parent of a newly diagnosed child, was in April 2016. It is hard to fully convey how far we have come since then. The way I think and feel has totally transformed. Back then, I was just starting on the road that led to where we are today, and I am still travelling. Here are a few of the things I have taken on board so far.
12 Things I Have Learned1. Everything will be okay.
It took me a while to really embrace this and there will always be times when it is not okay, when new challenges seem impossible to overcome. But we can get through them.
2. I was in Italy all along. No one can ever fully appreciate where they are heading when they become a parent. It is a Brave New World for all and there will be many things that defy our expectations and understanding. It took a while, but I know now that I am exactly where I am meant to be – it is where I was going all along.
3. I have learned that I will never support Autism Speaks, or its UK branch, Autistica. I chose not to ‘Light it Up Blue’ or wear blue on this day. There are many who have articulated why this is the case better than I can. Instead, I choose organisations that listen to autistic voices, such as the Autism Self-Advocacy Network.
4. It is highly likely that I am neurodivergent myself.
5. I have learned that the puzzle piece is not the symbol for me. When I first started writing, I used the imagery of the puzzle piece in several posts, without really thinking. The connotations of the puzzle piece are problematic for many autistics – confusion and mystery, a problem that needs to be solved, a missing piece, something that must be set right.
On the other hand, many have embraced the symbol and choose to place the focus on other meanings – many pieces being part of the whole, diversity and acceptance of all different ‘shapes’. I appreciate these ideas but the rainbow infinity neurodiversity symbol is my preferred symbol. For me, there is no escaping the more negative associations of the puzzle piece.
6. I have learned that even though I embrace autism fully – I embrace my son and I embrace myself, wholeheartedly and without judgement – there will still be days that are very, very hard. But we get through them together.
7. I will have to fight, tooth and nail, for every appointment, for every scrap of support, for every penny of funding, every ounce of help.
8. There are those who will fight with me, but they are few and far between. I take no help for granted and I cherish those who are truly on our side.
9. I have learned that functioning labels are, at best, unhelpful and, at worst, damaging. When Biggest was first diagnosed, I clung to the ‘ideal’ of ‘high-functioning’ like it was a holy grail. Somehow, if my son was high-functioning, everything would be alright. I thought that a lack of cognitive impairment was synonymous with high-functioning. I thought that as long as my son could count and talk and tell me Jupiter’s moons, then things would be easier or that he had a brighter future. I know now that I was so utterly misguided.
10. Those who cannot or will not speak, more often than not hear and understand. To mistake a lack of conventional communication with a lack of self or a lack of intelligence is a grave error. Presume competence, always.
11. I have learned that balancing the needs of both my children, when they are often in direct conflict with one another, is incredibly hard. But I face it, every day, and I do my best. It is all we can ever do.
12. I have learned that without acceptance, love, understanding and an open mind, awareness is useless.
If you would like to learn more about any of the issues above, please take a look at our autism archives.