I am writing this post today to highlight and honour the role of women who are mothers of autistic children in recognition of International Women’s Day.
The http://www.annakennedyonline.com organisation posted a video on You Tube today titled ‘Inspiring Women, Inspiring Change’ in which it posed several questions to mothers of autistic children.
Here are my answers to those questions:-
How has living with an autistic child changed your life?
On a practical level my life has become a never ending cycle of meetings, assessments, phone calls, messages, therapies, bureaucracy and lots of paperwork!! As an individual I have become a ‘Warrior Mum’. Out of necessity I have become a fighter in life and stronger than I ever imagined possible in order to advocate for my son. Having an autistic child also requires a lot of patience and calm, luckily I already had those attributes!
What advice would you give to mothers of autistic children?
- Trust your instincts. Remember that you know your own child better than anyone. If you receive advice that doesn’t feel right to you, question it and challenge it.
- Approach life with your child in bite size pieces. Don’t look too far ahead into the future, deal with the here and now issues. It’s impossible to know what your child will and will not be capable of in the future so try not to dwell on it. At the same time, don’t limit your expectations. Anything is possible and your autistic child can, and probably will, surprise you.
- Don’t forget to take care of yourself too. Feed the feeder! Raising an autistic child is physically and emotionally exhausting and it’s important that you don’t forget to take care of yourself in the process.
- Try to connect with other mothers of autistic children for support and understanding.
What is the biggest challenge you have had to overcome?
When you have an autistic child life becomes one hurdle after another. Just when you have overcome one challenge, another pops up to confront you straight away. I’d say the biggest challenge comes at the beginning of the journey with an autistic child; getting a diagnosis, emotionally coming to terms with it and practically understanding what it means for your child and your life. In time you readjust to a life where challenge is the norm and in that respect it becomes less of a challenge.
How has living with autism inspired you?
Having a child with autism has inspired me in many ways. Bearing witness to anyone who has to overcome significant difficulties in their daily lives is always inspiring. Through my son I have become a much more compassionate and humble person in general. It has also inspired me to learn as much as I can about how our brains work and to spread awareness of autism and neurodiversity.
I’m suffering from a kind of writer’s block with this blog but not in the sense of having nothing to say. I have the opposite problem, I have so much to say and my thoughts have spiralled way beyond my original goals for this blog . I’m struggling to organise my ideas into readable blog posts hence my silence here recently. Anyway……
I have been thinking a lot lately about the position I’m in as a non autistic person with an autistic child. It has crossed my mind that with this blog I am able to write as someone who can act as a sort of translator of autism to the non autistic community.
I don’t believe that a non autistic person can ever fully understand what it is like to be autistic or vice versa. I would never presume to speak with complete authority about autism but I think I do have as good an understanding of the condition as it is possible for a non autistic person to have. Of course, someone with autism could better explain than I how they experience the world but, I perhaps have the advantage of being better placed to communicate those experiences in a way that a non autistic person can relate to.
The other day I was reading an expat blog and it struck me that a lot of expat experiences make excellent analogies to use in explaining autism. It so happens that we are an expat family ourselves, we are British and live in the Netherlands, so I speak from personal experience!
Take learning the local language for example. It is one thing to learn and build up a vocabulary in a foreign language but often quite another thing to use the words appropriately and not stand out as a foreigner. It’s easy enough to learn a few basic words when you are new to a foreign country but what you might not fully understand is how and when those words are used in the foreign country as compared to your home country.
Take the Dutch word ‘alstublieft’. It means ‘please’ and it was obviously one of the first words that I learnt on arriving in the Netherlands. What I didn’t grasp right away however is the many ways in which the word is used in Dutch culture where it isn’t in Britain because it actually has a meaning in Dutch that goes beyond the English word ‘please’ which isn’t really translatable in a literal way. In particular, the Dutch say ‘please’ (alstublieft) whenever they pass something to someone else, be that payment in a shop or a cup of coffee to a friend. For a long time after I had arrived in the Netherlands it puzzled me that cashiers in the supermarket would speak to me in English before I had said anything at all. I kept thinking ‘How do they know I’m not Dutch? What is it about me that is giving it away?’ until one day I realised it was because I wasn’t saying “alstublieft” when handing over my money.
For autistic people, navigating their way through life can be a similar sort of experience. They may learn and know on an intellectual level certain social norms of behaviour for example that non autistic people develop almost without thinking about it, but they don’t necessarily enact upon them on an instinctive level. In the same way as a Dutch person would automatically say ‘alstublieft’ when handing something to someone at the level of a natural reflex, I as a foreigner have to more consciously think to say it at the appropriate times.
Fundamentally there is a difference between comprehending something academically and feeling it intuitively, and this is one of the core differences between the autistic and non autistic populations in some areas of life experience.