I always remember a 
newspaper editor telling me that stories about disabled people or with a disorder like autism did not sell papers, he used to shun them. He might have felt differently if someone he knew or loved had a disability. Getting positive media coverage is a huge challenge for this minority group.
This is Casdok’s poignant story about life with her autistic son Christopher, 19, to mark the launch of a national campaign raising awareness about autistic adults. It makes compelling reading. Please take the time to read it all and learn what it means for these isolated families.
When my son was born nearly 20 years ago, I had never heard of autism. If he had be born even 20 years earlier, he would have ended up in a mental hospital. Thankfully, they have now nearly all gone. However, the stigma still hangs on in the general public minds. The horrendous stories we hear of people who have mental health problems and don’t get the right help, doesn’t help the cause of autism.
There are now more cases of autism than ever before, or rather with better diagnosis, less children are slipping through the net. The unfortunate fiasco of the MMR may have scared a lot of parents giving their child this vital vaccine, but it did bring the plight of autistic people to the attention of the government. And over the last 20 years I have seen much improvement in schools, employment and adult housing. We still have a long way to go, some areas are better than others, but I do feel we are on the right track even though it may seem slow.
My son’s autism cost me my marriage, many friends and my career. But as a mother I put the needs of my son first. I have had to fight many battles for him, for his rights as a human for the same services as anyone else. He does not speak so I have had to be his voice. The National Autistic Society have just launched a campaign called ‘I Exist’ which highlight the lack of support that many autistic adults still face.
There is also a huge void in the lack of support for carers. The isolation and the financial support. The lack of understanding from employers, all cause hardship and pain. All these things us parents have to deal with as well as caring for our child. Even when I walk down the street with my son we are met with offensive remarks and these are not just from teenagers.
People’s intolerance of difference breaks my heart. My son would not hurt anyone. He does however self injure. All these things take their toll on me. Only recently in America, a mother murdered her autistic child, partly because of the attitude of society of our children. This is by no means an isolated case.
This year my son has to leave school and move to an adult placement. It took me 2 years to find and another year to obtain the funding. This is because there are not enough places to go round, and after all the specialist input I fought for at school I did not want him to end up in an out of date day centre. My son is fortunate in many ways that I am able to fight for him. Many others are not so fortunate. This should not be the case.
Saying all this, I do see change and progress. I have learnt much from having access to the internet. And being able to read blogs written by autistic people has been a great eye opener for me as I hope it has for others. I am optimistic as more autistic people now have a voice. And this gives me hope.
What an incredibly courageous woman. I’m only sorry she lost her marriage and career over it. What sort of a husband is that?
Great post Ellee – my best wishes to Christopher and his wonderful Mum.
I’d like to say a word about the carers for people with disability – they need a break. Caring for anyone includes an emotional element. Even when they are young and fit these wonderful people need some time out and that is why schools and facilities are so important, not just for the student who receives a benefit, but also for their carer. These schools need funding, a lot exist because of donations, so please, when you are giving to charity, remember the family close to home who needs this so much. Autistic people don’t grow out of it and carers get older and frail – they need support.
What I’ve become concerned about are the amount of children diagnosed with ADHD and ADD or who are thought to be in the ‘autistic spectrum’ and are drugged. More about that via email Ellee.
Thank you for running Casdok’s piece. That was really good of you, but you’re like that, aren’t you. Casdok is one of my favorite blog friends and her courage in adversity sometimes overwhelms me.
Well done, Ellee. No wonder I like you.
Casdok does what any mum does, puts her kid’s needs first. And the only voice a kid like Christopher has is through his mum. But who cares for her needs when she has had to face so much adversity?
Thank you all for the support you have shown Casdok. You have all made such relevant points.
I have a close friend whose son is autistic and she tells me that the most hurtful thing is when people treat him as a “thing” rather than a person. Also, as a teacher, she has to listen every day to her colleagues bosting about their “super-intelligent” children. You’d think, as members of a “caring profession” that they could be more sensitive, but they are not. I have taught many children and adults who have Aspergher’s syndrome [related] and this causes great distress too, although it is not widely known.
I too taught a child with Asperger’s Syndrome, WL. My regret is that I had to leave the profession through ill-health myself before I could see progress in our relationship.
Casdok writes: “My son’s autism cost me my marriage, many friends and my career. But as a mother I put the needs of my son first.”
In those words, she says everything.