This post is a response to;
Want to commit suicide because of my son’s autism
Tammy, who blogs at Autism Learning Felt (http://www.autismlearningfelt.com/) was looking through the search words used to get to her blog when she saw “Want to commit suicide because of my son’s autism”. Her post is a heartfelt response to the unknown person who searched for the phrase.
Please read Tammy's post.
A short while ago, there was a wave of support for a similar search using the term "I wish I didn't have Aspergers" and it was great to see the community come together to provide support and encouragement for the person in this position but I'm keen to see whether or not we're willing to open our arms to the carers.
I hope so.
The Issues between Advocates with Autism and Carers
Unfortunately, there is one big problem which stands between the advocates with autism and carers of people with autism - and it's a misunderstanding.
Advocates with autism see themselves as fighting to be accepted, not changed and certainly not cured. They see society as a major problem but they often see their carers as problems too. Their view is person-centric and it's all about themselves and others like themselves. They're usually less concerned about what they can't do and more focused on what they can. It's a great positive attitude which makes it much easier to accept oneself and be the best that you can be.
Carers have exactly the opposite view. Often they are carers of people with autism who are unable to self-advocate. As such they aren't as attuned to the internal thinking of those under their care and can only report what they see from their point of view. Since they are focussed on their job as carers, they think in terms of the things they are required to do for the people under their care. Obviously if a carer needs to do something, then it registers as a deficit. Carers still blame society for many of the issues but they also find issues with the "disabilities" of the people under their care.
Carers and advocates are mostly thinking the same things. They have similar needs and they are fighting for many of the same rights and support. Unfortunately their different frames of reference often put them at odds with each other.
When Carers Burn Out
Carers are often buried under the weight of their responsibilities. Since they are usually parents or close relatives, they feel that they have a responsibility to the people under their care and they are unable to escape from their situations. Caring is hard work and long hours. It often requires the carers to put their working and social lives on hold while they address the needs of their children well past the years they expected to. It's little wonder that carers often feel burnt out. It doesn't help either that the people who need carers often have communications difficulties and are unable to make it clear just how much they appreciate the help.
We all know about carers who reach breaking point and end up harming those in their care. These are well documented cases - and the autism community has rightly risen up in anger. It's understandable. There's no excuse to ever hurt a person who needs assistance. If you can't cope, then at least hand them over to "the system". If nothing else, it's a much better option than harming them.
Unfortunately, the autism community and our society are both neglecting carers on the edge. These carers aren't harming their children but they aren't coping either. They shouldn't be condemned but consoled. They need support to lighten their load, they need options to provide them with breaks and most of all, they need reassurance that their efforts aren't in vain.
This is one of the major issues I have with fundraising for autism research. Those funds aren't required to increase the scans for autism, or to print placards and leaflets about immunization - or even to support scientists in their search for the elusive autism genetic code. No, that funding should be used to provide services and assistance to people who are already on the autism spectrum and their carers. They should be used to improve the quality of life of families - not to try to detect and remove autism before it is born.
The Message to Carers
I know that I've strayed a little from the main point of this article but somehow it all felt important. My message to carers in general and to the carer on the edge who wrote; “I want to commit suicide because of my son’s autism” in particular is;
Thank you carers! Your care and your dedication is very much appreciated by those whose lives you enrich every day with your presence. We know that it's not an easy task and we know that sometimes we seem less appreciative than we should be.
We know that your life has not gone in the direction you probably imagined. We didn't choose the difficulties we face either but this is who we are and we are willing to work with what we have. There are a lot of positives in our life, if only you could see them from our point of view. I would love it if you could spend less time looking for miracle cures and more time simply trying to understand what it feels like to be me. The autism blogging and facebook communities are there for you. Please talk to these people because they hold the keys to that understanding.
We want you to continue doing your best but we need you to look after yourself too. Take regular breaks, arrange respite care and seek counselling for yourself. An exhausted carer can't help anyone. Don't consider permanent solutions like murder and suicide. If you find yourself thinking along these lines get help - it will get better but only if you ask for help. There's no shame in asking and your life and my life are both too valuable to risk if you're feeling overwhelmed.
Finally, don't sweat the small stuff. It doesn't matter that our reading level is behind that of other kids our age or that we don't eat with our mouths closed. Don't paint our future with the word NEVER. Don't give up, just wait and see what happens. Don't withhold activities and opportunities simply because you think we won't cope - give us a go and if it fails, try again next year - we may surprise you.
Looking from the outside in might make you feel sad but if only you could see from our point of view, you'd understand how happy we can be too. Don't interpret a grimace as an expression of pain or a jumping episode as simply exercise - these are often expressions of extreme happiness and if it is you that gets this response from us, then please understand that we've just given you a "million dollar smile".