Wednesday, July 11, 2012

A Response to "Want to commit suicide because of my son's autism"


This post is a response to; 

Want to commit suicide because of my son’s autism
by Tammy
http://www.autismlearningfelt.com/2012/07/want-to-commit-suicide-because-of-my-sons-autism.html

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".

10 comments:

Tammy said...

You've written a great response with this post. As a mom of an autistic child, my viewpoint is based on the two of us. Reading your point of view has touched me. It was like reading what I think my son would feel. Thank you!

Dixie Redmond said...

I appreciate that you wrote this with a generosity of spirit.

AspieMom said...

Thank you for this wonderful reminder that I need to chill out. Last year I started seeing my son's psychiatrist (since she knew my situation so well!) and started on anti-anxiety medication. It made a world of difference! I can step back and find other ways for dealing with his quirkiness, without getting upset and upsetting him even more. I've taken time to spend more down time with him -- we are currently addicted to the BBC series Primeval and we love watching the shows together. And I have found it to be so important to have a Girls Night Out every now and then. I try so hard to understand how he thinks, but I know sometimes it is just really hard, so thanks for all your encouragement. I love reading your blogs!

AspieMom said...

Thank you for this wonderful reminder that I need to chill out. Last year I started seeing my son's psychiatrist (since she knew my situation so well!) and started on anti-anxiety medication. It made a world of difference! I can step back and find other ways for dealing with his quirkiness, without getting upset and upsetting him even more. I've taken time to spend more down time with him -- we are currently addicted to the BBC series Primeval and we love watching the shows together. And I have found it to be so important to have a Girls Night Out every now and then. I try so hard to understand how he thinks, but I know sometimes it is just really hard, so thanks for all your encouragement. I love reading your blogs!

Beth said...

This is a wonderful post, one I wish I had written; I've certainly thought it many times. I'll read those terrible stories of parents who harm their children--often, it's moms who also commit suicide--and wonder "where were the supports for her?" No, I'm not making excuses, the parent has committed a crime, the child is the victim. But there are moments I think "there but for the grace..." Everyone talks respite but what if a parent doesn't have a support system of friends and family in place or can't afford to pay a sitter? Yes, there's Medicaid, but it takes a lot of time and energy to apply for this kind of assistance. What does a parent do when they have nothing left over to find social services? I think the community needs to start becoming much more active toward finding and helping these parents if we're going to make real progress. These caregivers will be doing this for the rest of their lives, even as they worry and scramble to plan for their children's futures after they're gone.

Anonymous said...

"...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..."

True! It *also* doesn't help either that some other members of the Asperger's/autism community out there who don't need carers themselves go on and on and on about how everyone who doesn't have Asperger's or autism is supposedly inferior. After all, insulting everyone everyone who doesn't have Asperger's or autism includes insulting carers who doesn't have Asperger's or autism...

"...They should be used to improve the quality of life of families - not to try to detect and remove autism before it is born..."

Some other problems already can be detected and removed before a baby is born, such as hypoplastic left heart syndrome (HLHS):

http://onlinelibrary.wiley.com/doi/10.1002/uog.2595/pdf has a lot of information.

http://www.ajc.com/health/content/shared-auto/healthnews/born/631414.html says:

"TUESDAY, Sept. 29 (HealthDay News) -- Infants born with a rare heart defect may have better outcomes when surgery to repair the heart is done while the infant is still in the womb, Harvard University researchers say..."

http://tricuspid.wordpress.com/2009/10/01/the-dirty-little-secret-of-hlhs/ says:

"...70 future HLHS patients underwent surgery while still in the womb – a needle was inserted into the mother's abdomen, passed into the fetus, and into the heart of the unborn child. A small balloon was used to enlarge the abnormally small Aortic Valve. 51 of the procedures were considered successful... and 30% (17 children of the 51) were born with two functional ventricles. That's 17 children who *won't* have HLHS..."

How is trying to detect and remove an inability to communicate and self-advocate any worse than trying to detect and remove an incompleteness in development of the heart (which is what HLHS is)?

Anonymous said...

Also, what if prenatal detection and removal of severe autism would make the baby have Asperger's like you do (you're able to communicate, you're able to self-advocate, you don't need to be in a carer's custody your whole life) instead of making the baby neurotypical?

Me said...

Thanks for this post. I have two children with Aspergers and while some days I feel blessed, there are other days I feel completely overwhelmed and beyond my coping mechanisms. A recent study showed that mothers of children with autism had the same Cortisol levels of soldiers returning from Afghanistan. Dealing with stress day in day out is traumatic and affects peoples mental and emotional resilience. We need to build in as many supports as we can for families living with ASD. This will ensure the best possible quality of life for all family members. Particularly in those cases where adults on the spectrum must remain in the care of their parents.

Anonymous said...

Hi I have a daughter with autism. I really feel so cursed, unloved. Sometimes I want to commit suicide. Maybe it's a punishment for having child out of wedlock.

Gavin Bollard said...

Anonymous. It's very easy to focus on the negatives and so much harder to find positives in a tough situation but it needs to be done. The autism spectrum ranges quite considerably and I'm guessing that your daughter is at the lower, non-verbal end.

This is not a punishment for having a child out of wedlock. I God really cared about the little things, like wedlock, then he'd care about the suffering of starving children overseas. It's not that I'm an "unbeliever" it's just that one's religion ought to make sense.

You need to try to move past the thought that this is a punishment and try to find the things that you need in life. Suicide is not an answer. Regular breaks is a good option, adult company is another good option. There must be local groups of people in similar situations who you can contact for support, advice and general conversation. If you can't find one, then go to a place (a community place, local government office or even a library) where they can find one for you.

It's much easier to raise children with special needs when you have more than one adult involved. This doesn't have to be a husband. It can be someone in a similar situation who is willing to share the load with you. It's very important that you find a way to take some time out for yourself.

It will also help your daughter if she is exposed to more than one carer.