It's World Autism Awareness Day. Come and share your experiences.

[PhilPhilConnors]

What better day than to share your experiences of autism, hopefully together we can dispel some ASD myths!

My ds is 10. He was diagnosed last year after a difficult time of trying to prove to others what we see. He masks very well in all the places where we ever need his ASD to be evident!
He will give eye contact, he will chat to people etc.
In school he behaves perfectly. There are signs there, constant finger flicking, avoiding work, getting giddy, but they're not seen because he's not having meltdowns.
At home he can be lovely, but he needs almost constant supervision, he can be very violent, demand avoidant, intolerant of others.

Out and about, he doesn't look different to any other child, but he will run off and swear, and sometimes grab things off shelves and look incredibly naughty.

Thanks for the extra info IoraRua. Your first post was perhaps ambiguous as to whether you saw much value in your brother or in the attempts to help him. My experience of autism is one where people see no value in me or in any interventions, so my response to your original post was coloured by that. I'm sorry to have overreacted without considering that I didn't have enough information.

No, I don't tend to share all the details of my childhood. I don't tend to share experiences like waking up to finding him strangling me. Or being chased around the house with a knife. Or when I was pregnant, having him attack my belly.

I am glad you see what I mean though. Like I said, I've worked with kids with autism. They've been fabulous little people, and I've really enjoyed my time with them. But I can't lie about my family experience.

I am sad for you that you've run into dickish people. I am a huge advocate for interventions and understanding. Unfortunately in my brothers case, all the professionals, therapies, courses, hours, money, intervention programmes etc etc that we've poured in haven't helped. He has to want to engage with them, and I don't think he does.

Iora, I'm sorry to hear that you've been through all that.
One of my biggest fears is dd, ds1 and ds3 feeling that way about ds2 when they're older.
We have to keep matches and knives locked away, and can head off the majority of the violence, but we're very aware that their lives are more difficult than their friend's.

Well, I live in hope that one day he will want to change his behaviour Phil. Maybe something will just click and he'll want to, and we'll keep trying different things, but it's not happening right now. And I have learned to - not be at peace with it - but to only give emotionally what I can afford to, and to accept that yeah, it's rough. It's a hard lesson to learn.

I know other people who have siblings with autism, and I don't think many have this experience, if that's reassuring at all! I don't like saying this stuff because I know it worries a lot of parents but at the same time, I feel it needs to be said so that other people struggling out there see they're not alone. But thankfully I don't think it's the most common situation out there.

again to magnificat btw, I think I came off quite snippy in my last answer, and I really didn't mean to!

Sorry, I dont know what you mean by the second sentence zzz?

Ah i see, thank you :)

My db is now in his 40s,he was finally diagnosed aged 6 but I'm sure it would have been much earlier these days. He has what I would describe as typical autism. He is non verbal and uses makaton. My parents went through an awful time when he was young as he was hyperactive and didn't sleep much and was an absconder so would just bolt for any open door so my parents were permanently on edge.
He also had alot of the food issues mentioned, would have lived on weetabix and crisps if allowed.
He also would try to eat inappropriate things like custard powder and cigarette ash so cupboards were locked,
He attended special school(residentially from age 11) .
He now lives in supported living and seems very happy.
Although he has typical autism he is very loving and is always hugging me.

I don't understand why anyone would support anything to do with Autism Speaks. They're attitude to autism is horrific. Their idea of 'raising awareness' is so twisted it resulted in Autism Speaks UK changing their name to Autistica and severing all ties with them.

Here's an extract from their 'awareness' film which shows exactly what they think of people like me and children like my daughter:

I am autism.

I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

I know where you live, and guess what? I live there too. I hover around all of you.

I know no colour barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.

I work very quickly. I work faster than paediatric AIDS, cancer and diabetes combined.

And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.

You have no cure for me. Your scientists don’t have the resources, and I relish their desperation.

Your neighbours are happier to pretend that I don’t exist, of course, until it’s their child. I am autism.

I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.

I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I am still winning, and you are scared, and you should be.

I am autism.

You ignored me.

My goodness that is utterly shocking. Thankyou for that, I hadn't realised how bad they are.

Much worse than Welcome to Holland.

My ds is 10 and was diagnosed with ASD at 7, although I knew from when he was 3.

He's popular at school - his teacher describes him as 'charismatic' and says that the other children respect and like him. He is extremely competent on a practical level, vastly more so than his dizzy 12 year brother. He is musical, plays two instruments, loves food but especially anything a bit challenging (for example rose scented dark chocolate, baby octopus, winkles). So far, so untypical. BUT, he also massively struggles with managing anger or boredom, and is very prickly and irritable at times. He takes everything the wrong way, is oppositional and defensive and can be very difficult to teach and parent. Dreading the teenage years...

Want to add that I'm blisteringly proud of ds, I think he's a fantastic child. I really love spending time with him. It helps that he's beautiful, a great sleeper, eats everything, and is very affectionate. That makes up for the fact that 90% of our conversations are about things like the seating plans on the new Airbus 380, or which airport has the worst access to its runways, or the list price and specs of this years Audi TT....

This came up as a link from the uncommon sense blog earlier m.facebook.com/profile.php?id=446945788708219 Tone It Down Taupe!

"Not worse than Holland for me. Holland is all about a deep regret and longing to have a different child than the one you birthed. This characterises the child's disability as a menacing disease"

That's just not the case. The Holland narrative is about coping with altered expectations, not disaster or threat. The analogy is of a traveller (parent) who realises that they have landed in Holland (given birth to a child with Downs) instead of Italy as expected (had a neurotypic child). It describes the initial shock and disorientation, and yes - disappointment. But then it goes on to point out that Holland is beautiful and has all sorts of fantastic and interesting features, and once you are over the shock, you learn to love it and appreciate what makes it special. And yes, you do sometimes think wistfully about Italy, but you now are happy to be where you are.

Here - note my italics

"WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I have a ds at 11 who was diagnosed when he was five. My husband was diagnosed last octorber. I have the final part of my assessment in may and we are getting the final reports on my 2 year old ds assessment on Monday. It seems it really could be a genetic link for our family. We do have a 16 month old to who appears to be ok ( I refuse to use the word normal. I hate the phrase normal as one persons normal is another persons weird it's very much a perception thing.).

"For me it is very clear that the Holland author is not *happy to be where" she is."

Well she's allowed to feel like that isn't she?

I hope my ds will go to university, get a good job, marry, live independently. He is fit, strong, healthy.

If he was so impaired that he would never live independently, never have a chance to be a parent or lover, had poor physical health - well, I'd find that very difficult to feel joyful and accepting about that.