Why do I blog?

Notes From Home is doing a link on activism and I thought this would be a great opportunity to remind people why I blog.  If you have read some of my posts, you may have realised that I write quite a lot about my experiences as a mum of an autistic son.  This need to share my experiences emerged from a period in my life in which I found myself constantly battling with someone or something, whether it was seeking a diagnosis for my son, dealing with his mental health problems or the relentless battle with the education system.  It was also during this time that I encountered many people, including some relatives and friends, who tended to blame me and my husband for our son’s behaviour, a blame that turned into disbelief when we received a diagnosis of ASD for our son.  I think because my son was not obviously physically impaired people could not, or would not, see that he had a disability.  As well as this, we have experienced members of the public standing and staring at us, even commenting sometimes, when our son acts in ways that are not deemed socially acceptable.  Sometimes I wish people would just ask me if everything is OK and give me an opportunity to explain that he is autistic.  Unfortunately they don’t and I can understand why they don’t because they probably feel unsure about the situation unfolding in front of them, probably because they do not have any understanding of what it is to be autistic.  I’m sure I would be the same if I was in their shoes. 

But what astonished me most was the behaviour of some professionals who failed to listen to me properly and to respond to my concerns.  Many a time I was left speechless by the behaviour of some people who tried to intimidate me when I asked questions about my son’s development or his educational support.  Sometimes I felt that I had breached an unwritten rule somewhere that parents were  supposed to be passive members of society who should just accept what they are told rather than question things.  In my opinion, this failure to work with me as an equal was one of the reasons why my son’s needs were not met earlier enough and why he ultimately had a mental health crisis.  And he is not alone to have suffered mental health problems.  According to recent research by the National Autistic Society (NAS)over 70% of autistic children suffer from a mental health condition, of which 83% had suffered their first mental health problems before the age of 10, half before the age of 5.   These are worrying statistics which suggests to me that things need to be done to better support our young autistic people and their families.  As the NAS states, there is no reason why autistic children shouldn’t have good mental health like everyone else.
So, motivated by my experiences, at the end of 2010 my blog was born with the intention that I would contribute to spreading awareness through the blogosphere.  If only a few people read my blog and find out a little bit more about what it is like to parent an autistic child, then I will feel as though I have contributed to a cause that aspires for greater understanding and acceptance of our autistic people. 
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9 Responses to Why do I blog?

  1. Aspie in the family says:

    >@Sasha – thanks for popping by and commenting. It is so frustrating when people don't listen and become accusatory.

    @Bid Daddy Autism – thanks for the comment. Great to hear that your son is happy and awesome. Interesting to hear that you say that you son is clearly autistic now because I would say the same with my son who has become more obviously autistic in the last few years.

  2. Big Daddy Autism says:

    >I can totally relate with your early experience. Family members blaming and then disbelieving. And then, we ran into the doctors who assumed we were just being overly nervous parents. My son is now 13 and abundantly happy and awesome. But he is also clearly autistic and no doctor or family would ever think to doubt us or blame us now.

    Keep doing what your doing.

  3. Sasha says:

    >It can be very difficult when the very ones we are supposed to trust in helping our children will not listen or betray that trust. {{hug}}
    I applaud your desire to reach out and touch as many people as possible on behalf of your son.

  4. Aspie in the family says:

    >Hello Lora and thankyou for making such a lovely supportive comment. It is really nice to hear that others enjoy reading my blog and it also helps motivate me to continue.

  5. Lora says:

    >I have thoroughly enjoyed reading your blog and good for you for raising awareness, you deserve a blog award for your dedication and excellent writing.

  6. Aspie in the family says:

    >Hi MWM, nice to hear from you and thank you for your lovely comment – really inspires me to continue. I have been wondering how you were getting on. It sounds like you are in the middle of two services who are not working very well together which I find is a common complaint from many parents. I'll pop over to your new blog to read more about how you're getting on.

  7. MWM says:

    >HI, I love reading your blog and have gained alot from your experiences and been able to use things you have blogged about in our own quest to get a diagnosis for Isaac (this is super little men from Mad Life by the way, I have moved my blog to http://moonwalkingmum.blogspot.com/). As I think I said in my previous life as SLM in response to one of your posts, what do us parents know, how dare we know our child better than a profesional with god knows how many qualifications, this obviously makes them a much better judge than us, who live with the 24 hours a day, 7 days a week x Please do keep bloggin about your experiences. We had a CAMHS meeting this week and I think we are back to the not our problem, its theirs, not its not etc etc over getting more support. CAMHS say its down to the educators and I know the educators are going to say they cant access it without a statement, arrggghhhhhh!!! I will no doubt be blogging about my frustrations

  8. Aspie in the family says:

    >Hi Lucy – thankyou for your great comment – you illustrate the problems of a hidden disability really well. When people stare or even make rude comments, I have found it puts so much pressure on us, and its that social pressure that our autistic people struggle so much with.

  9. LUCEWOMAN says:

    >People love a visulak

    One boy I looked after had Asperger's syndrome, severe epilepsy, tourette's syndrome and various non-related medical problems. He would spit, swear, kick, scream and so on in public. Because he looked so 'normal' people always stared, 'tutted' and some made comments. As his epilepsy became more severe, he got fitted with a protective helmet. Overnight, there was a public acceptance of all of these behaviours, simply because he had a helmet on. This meant us as staff, and his family could take him to cafe's, museums and so forth without being on edge. It shouldn't be this way….

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