Journalist thinks severely autistic child better off dead

[Bakelitebelle]

I wouldn't like to have Carol Sarler as my 'friend' here

What a twat.

If "Tom" is real I feel so terribly terribly bad for him being stuck with parents who show such a lack of understanding.

blueemerald where did you get the impression the parents showed a lack of understanding? They just sound shot to bits and 'Tom' sounds severely challenging and they don't have enough help. I was shocked that the special schools haven't coped with him - the parents were brave enough to take him on holiday and do their best.

With the right help, they could all lead good lives. It's disappointing that the article doesn't touch on this, and the potential of young people with severe autism and their families. And the understanding, compassion, hilarity and depth they bring to people around them, not just the pain.

This is very very old and there was a big campaign at the time to get an apology which I can't remember the outcome of.

Yes, it is very old. Vile, but old.

sorry, I didn't realise. I'll get this thread removed

It's quite common though isn't it, for someone's 'friend'/cousin/sister/neighbour to look in from the outside and say 'oh what a terrible life'.

If you say 'er well yes it's harder than usual but it's a good life, we enjoy it' they say you're in denial

I have a 'Tom' so feel justified in commenting that life can be good with a severely autistic child.

And anyway the story is bonkers - I want to know why school hasn't worked out. There are plenty of schools out there that can cope with challenging beahviours.

Amazing how the writer failed to see any good in their life! Just because parents don't work anymore, doesn't mean they are unhappy about it
Why on earth would they go on a plane to stay in a cottage?!
Maybe she should spend less time writing this crap and more time helping her "friend"!

Saintly, your life often does sound fun actually. Hard but fun. You're an inspiration.

Apart from when I am screaming like a fishwife starlight or necking bottles of wine [lol] No it is fun these days, ds1 has his moments but on the whole he's happy.

But i should add - ds1 has a fab school and a good care package. The journo in the article would probably think it was a waste of taxpayers money

Well, isn't she just a ray of sunshine.

The world would be a much better place without poisonous journos advocating eugenics.

Fucking hell what a depressing article. I particularly hate the bit talking about siblings being forced into a role as carer. I am quite stunned by the whole thing.

I remember reading the article at the time and wondering what 'Cath and John' (if they even exist) thought of their 'friend's' article.

Oh but she's so observant spotting before everyone else, even the thicko parents with their ruined lives. And damming everyone who had additional children (so as well as wishing ds1 dead, she thinks ds2 and ds3 have some dreadful life as well - maybe she should ask them). Even though it's 'worst of all' that other babies, real babies, proper babies have been ruled out.

Poor old granny's life ruined as well.

If a 'friend' wrote something of this sort about our family (and they could, ds1 does the same sort of stuff as 'Tom') I'd never allow them near any of our children again.

I think I'm still incensed by this article 2 years later.

Three years later!

OMG glad shes not my friend. My ds is severely autistic, gdd, adhd, low muscle tone & pica. He doesnt communicate at all, and is still in nappies, and faecal smears etc. Crys a lot, sleeps very little. It can be extremely tiring caring for ds and his NT brothers. I was in same job for 17 years and gave it up to care for ds (had no choice really), dh also gave up his job. It is not what we planned, not the life we dreamed of, and it does get hard. However.... there is not a day goes by that i wish ds had not been born, i would never be without him. He is my life and i am so glad that at this time i am here to care and look after him, though it does worry me about when im gone (only 42 lol, so hope ive got a while yet). I have always said to my nt ds that i hope when im gone you will always visit your brother (assuming he will be in residential care), they both say dont worry mum he can stay with me n my wife (lol they are 12 & 9). I want them to have their own lives, would not expect them to have to look after ds, however just to know they would always care about him and visit him etc is good enough for me. Imagine having a friend like that who would actually think you were better off without your child, i found it extremely sad. As for holidays, i wouldnt dream of taking ds on a plane, however we do get away usually 2 times a year, to a caravan. Go by car can leave, stop etc when we want. Self catering, so no prob there and can do our own thing. I am extremely happy if not tired and worried at times and wouldnt be without my ds ever.

Shazian that was a beautiful riposte to such a poisonous article. I almost feel sorry for the woman, she'll never understand that depth of selfless love.

Lambskin, . Though can you imagine god forbid that anyone in her immediate family, gets ill or has an accident and needs 24/7 care. How will she cope, what will she do.... more importantly will she change her views!!

I hesitate to say this but some of that article rings a little bell of truth.

Fact is me and DH never go out together in the evenings. We know our DS cannot go on holidays (even if we could afford them) I cannot work full time. Grandma is the only other person who can look after DS. No, we could not consider a sibing for him because we don't want to burden them with his care.

I get hacked off explaining to my friends why I 'can't' do stuff with them because it doesn't fit in with him and his routine. They don't realise - why would they know that I cannot stay out when it gets dark?

It's not the life we planned. The only thing that keeps us going is watching football (DH) and trips to the gym (me)

So in some respects, our lives are a bit beached these days. And for the rest of our lives.

Of course we love him. And because we love him, we have to love the thing that makes him who he is. The autism. He's got a lot to give, absolutely.

But, bugger me, we have to work a whole lot harder than most parents.

When we attempted a trip to London. (Yes, with a huge amount of preparation and research) he was shouting and screaming on the train platform. When another passener complained about the noise I had to explain that he was autistic.

Another passanger looked very sympathetic and said 'you must have the patience of saints'

Yeah, yeah, we do.

But I didn't want to have it.

Clearly the hack is a fool. Absolutely.

Oh yes she describes our life (I was a bit dumbfounded at the choice to fly - well if we flew we would expect that we might get screaming - ds1 doesn't really do waiting), but it's the tone she applies to the life. A judgment from outside that their life is lacking. It's something I've seen on here before as well - many many years ago, where someone use to talk quite regularly of their aunt's son with DS. And how this child had ruined her aunt's life, although her aunt wouldn't admit it and said he was the light of her life. Er if her aunt said that why dispute it? This article reminds me of that

Although it doesn't sound as if the family have access to respite and we do, which makes a big difference (or school, but I'd love to know more about the 'well they tried it and it didn't work' - I have friends who choose to run home programmes, but it doesn't sound like that in the article).

Spinkle I think a lot of us recognize the suffering the parents are going through and have been there/are there quite a lot of the time.

The difficulty I found was that an outsider to the family was judging this child's life to be worthless and was essentially advocating death, without touching on the considerably less nazi alternatives. If the family had an adequate amount of appropriate help, it would have been another story completely.

By the way, I have asked for this to be pulled as it has been pointed out to me that it is hopelessly out of date.

Sorry, Bakelite, wasn't pointing it out in an intentionally-stroppy way - just didn't want people to think it was 'fresh' ignorance, iyswim. For all we know, the journo has given birth to an autistic baby who she adores by now.