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

(128 Posts)
PhilPhilConnors Sat 02-Apr-16 12:29:51

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.

Alfieisnoisy Sat 02-Apr-16 12:32:44

My son is 14 and diagnosed at 8. He managed to cope well until Y6/7 when he began to really struggle. He now attends a special school.

Like your DS phil my son will give good eye contact and it can be hard to spot his challenges. He is very challenging in the home though.

EatShitDerek Sat 02-Apr-16 12:34:31

Message withdrawn at poster's request.

ditavonteesed Sat 02-Apr-16 12:38:25

my dd was diagnosed aged 11 as she is amazing at masking it, then explodes at home. Having a diagnosis has made a major difference to our lives as she no longer has to hide who she is and family make allowances and understand her better. She is the most amazing, kind, funny person I know, she chats to everyone, makes friends easily and always tries to make everyone happy (but the pressure of that means she needs a lot of alone time and a lot of sleep). Our walls may have holes in but it's the place she feels comfortable enough to let the frustrations of the outside world out.

TheGhostOfBarryFairbrother Sat 02-Apr-16 12:43:48

That's fantastic Derek

I'm marking my place... I'm doing a PhD in the field of autism and it's so helpful to hear about it in real life, keeps me connected.

PhilPhilConnors Sat 02-Apr-16 12:48:42

Dita, that sounds familiar!

Ds is very good at copying his peers and looking like any other ten yr old, but as soon as he gets in the car he is angry at every little thing that's gone wrong at school.
And yes to holes in the walls!

livvylongpants Sat 02-Apr-16 12:52:20

DS is 2.5 and has recently been diagnosed.

he doesn't really sleep well, he has hyper sensitive hearing so a mouse could fart outside and it would wake him. he is responsive to known adults, and will play as long as you play what he wants when he wants. He has very little speech but we are having to wait up to 6 months for speech and language therapy.. so much for early intervention!

He can be violant due to his lack of speech, he's angry, he knows what he wants and can't verbalise it. he does do some 'classic' autistic things. he likes to line things up and can count to 10 and loves shapes.

Many people are disbelieving as many 2 year olds will do some of the things he does, they don't understand the level to which he does things, if i had a £1 for everytime someone said 'oh well i know a kid that didnt talk till they were 4 and they are a rocket scientist now'

we are lucky to have a supportive pre school and family who accept him as he is and don't force him to e.g sit at story time and listen

PhilPhilConnors Sat 02-Apr-16 12:59:48

I think that's one of the problems that stops people from understanding - behaviours are still human behaviours, but you're right, it's the level that they appear.

Ds's headteacher commented that we all feel anxious about something, so you just need to try a bit harder, like everyone else does.
She gave the example of how she feels anxious driving to a new place, but she grits her teeth and gets on with it.
I have ASD, I get anxious driving to new places, but this means I will obsessively Google where I'm going, memorising roads, looking at Google street view and memorising landmarks and shops so I can visualise where I'm going. This may stop me doing anything else for days. After the journey I will then need a few days to recover, again, stopping me from doing anything else.
I'm not doing this deliberately, nor am I choosing to be self indulgent, and this is what people need to understand.

Obs2016 Sat 02-Apr-16 13:01:47

School's and health professionals seem to do the most damage, re their ignorance, or differing priorities.
My son was severely damaged by his primary school.

PhilPhilConnors Sat 02-Apr-16 13:05:35

I have recently started a basic autism course, I can only use the information provided.
I'm shocked at some of the outdated crap quoted in the booklets provided, and this is the sort of course a carer or teacher may take. It's no wonder there's so much ignorance.

ditavonteesed Sat 02-Apr-16 13:10:41

I went on an autism awareness course with my mum recently that was aimed at parents, I didn;t go back to the second one it was so basic. If I didn;t already know all of what they told us then dd would be very unhappy, I think most parents of autistic children no far more about how to adapt life than professionals.

Expatmomma Sat 02-Apr-16 13:11:25

My son has ASD.
He can not cope with loud, noisy, crowded places as he hears and sees bloody everything and that becomes overwhelming.

As a result he will either shut down, not look at you or speak to anyone or become very hyper and trip and fall almost as of he is drowning!!!

Needless to say we avoid busy noisy places with him.

This video gives a good idea of what the experience can be like for a child with ASD.

m.facebook.com/story.php?story_fbid=10153265121686599&id=28389691598

On my phone so hope the link works... If not the video can be seen on The National Autistic Society's Facebook account.

x2boys Sat 02-Apr-16 13:13:11

Ds is nearly six he was diagnosed at three and half he also has associated learning disabilities he has a chromosome deletion which the geneticists believe is the underlying cause of his autism and learning disabilities he's non verbal and attends a special school he's funny , and cheeky and a little monkey at times also hard work but we love him to bits smile

PhilPhilConnors Sat 02-Apr-16 13:15:47

This video give insight into sensory issues and how overload happens.

MsGee Sat 02-Apr-16 13:16:52

My DD was recently diagnosed with ASD after an awful two years of watching her struggle. As she had experienced a lot of bereavements we thought her problems related to that. Since we had a dx it's a lot easier. But when I tell people things are much better I sometimes think they don't understand that it's better because we are working so hard behind the scenes to make her world OK for her. She's wonderful but even then good days are exhausting.

PhilPhilConnors Sat 02-Apr-16 13:22:36

Something else we find is that when people find out ds has a diagnosis, they assume that it can be treated so we should not be having problems with him any more.
With ds, knowing for sure has made a huge difference to us, but the behaviour is still there, but we are better at knowing how to make things easier for him, which reduces the behaviour.
We're hoping that he can learn strategies which will help him cope better.

We've also been told that because ds holds it together in school, he is choosing to behave badly at home. Again, this is not true, home is his safe place where he can relax, there is no choice in the matter. If he has had a stressful day at school, it has to come out somehow.

ditavonteesed Sat 02-Apr-16 13:23:34

MsGee, I know what you mean about exhausting good days, the bad days are usually when I am too tired tio be on full alert all the time. You have to be switched on to everything you say and do. I am naturally the most sarcastic, dry person as is dh and we struggle sometimes to be the permant rays of sunshine needed.

JoffreyBaratheon Sat 02-Apr-16 13:26:10

My son is a young adult with atypical autism. He became autistic around 15 months old - previous to that, he had been utterly normal developmentally. He also has severe dyspraxia and hypotonic (floppy) muscles.

He was in a special school for kids with moderate learning difficulties and thrived and was happy there. And then in a special unit attached to a local primary school where he was in a class of 6 kids with some brilliant specialist teachers and TAs.

But then Blunkett shut the special schools and he got chucked into the mainstream where he struggled badly and left school with no GCSEs.

He then went to the local college where he worked on BTECs in Art and Design for five years and passed basic certificates in Maths and English, with the result that aged 21, he went to uni to study as a Graphic Designer. We're incredibly proud of him - a stunning achievement for a young man who as a little boy, couldn't speak or communicate at all for a few years. He couldn't read til he was 17, then something clicked. He loves books and audiobooks, now, appreciating them far more than his brothers who were reading by age 4.

He is bright, intelligent, and great company. He has a lot of arty friends, and goes to Comic Con every year with a friend - they make incredible costumes. He has quite a wide circle of friends, nothing like the awful 'Rainman' stereotype. (In fact he has more friends than his brothers, put together).

He was my dad's obvious favourite grandchild and my abiding sadness is dad died a few years back so never got to know his favourite grandson, who he doted on, got into university.

PhilPhilConnors Sat 02-Apr-16 13:33:55

Joffrey, that's inspirational.
Sorry about your Dad flowers

livvylongpants Sat 02-Apr-16 13:37:06

Joffrey, its funny you say that. it was after 15 months when we started noticing that perhaps something was not quite right with DS, byt he time he was 18 months i was certain he was autistic, but noone would do anything until he was 2, and then we had to wait 6 months to see a pediatrician.

It is frustrating, DS needs a 1 on 1 at preschoolm the county won't fund it without a paediatriatian report... but we have to wait 6 months to see a paed... bangs head against wall

it is also a postcode lottery, if we lived a mile away in a neighboring county, this would all have been sorted and everything done 6 months ago

Toffeewhirl Sat 02-Apr-16 13:38:37

Don't want to derail the thread, but I just wanted to warn you all that "The 'light it up blue' campaign was invented by Autism Speaks, an autism group in the USA who view autism as a disease to be cured. An acquaintance of mine (who has autism) says, 'They continue to promote eradication of us. We are not a cancer.'

On a more positive note, World Autism Awareness Week starts today, run by the National Autistic Society, who work with people with autism and learn from them.

Toffeewhirl Sat 02-Apr-16 13:41:12

Sorry - to be clear, the 'light it up blue' campaign and World Autism Awareness Day are one and the same.

livvylongpants Sat 02-Apr-16 13:43:19

Toffeewhirl, I am purposely not doing the light it up blue campaign because of the reasons you have stated, but believed world autism awareness day was a seperate entity. Autism speaks just took it over with the LIUB stuff

EllenJanethickerknickers Sat 02-Apr-16 14:16:41

Nice to have this in the main part of the site. There are many parents with DC with autism or other SN on MN as it has such a supportive SN section. Also it can be easier to get info and support on here than in RL, unfortunately.

My DS2 has ASD. He was DXed at 3 and is 16 now. He is doing his GCSEs soon and will hopefully go on to college to do a BTEC in software development. He's very obviously autistic, didn't speak until he was 4, flaps and skips, has an amazing encyclopaedic knowledge of films and music but not one friend. sad He is very difficult to have a conversation with and struggles with waiting or disappointment. His emotions range from bouncy and happy, to passively quiet to loudly upset. Not a lot else in his repertoire. I love him to bits.

BeyondTellsEveryoneRealFacts Sat 02-Apr-16 14:21:27

I meet like, every criteria on here. I was finally diagnosed at 29

Both of my DCs have a lot of 'quirks' that i recognise, i'm not pushing for it yet, but i forsee asd diagnoses for both of them. Ds2 is waiting to see the SALT, he didnt say a word til he was 2.

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