Silent but... (severe autism)

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Thoughts about having severe autism. My son is 10 and non-verbal, his CARS score is somewhere around 50 although I need to dig it out to check the exact score- so well into the 'severely autistic' range (as there's been a bit of discussion about that below the video) and if you are in the UK he is working below Level 1 of the national curriculum on p scales (at about p5 in most subjects - http://www.qcda.gov.uk/8541.aspx This should give an idea of his functioning.

With support and help he can get to do many of the things he likes. He's never been to the cinema (we need special sessions please) and we can't do pubs or eating out or flying or things like shopping. But he can swim and surf and horse ride because special events are run.

Generally he loves the great outdoors and away from traffic and the need for someone to hold onto him all the time can be relatively safe and free. I suppose the message is that you need to look beyond the autistic behaviours - those in a big part reflect sensory processing difficulties; there's more going on in there than meets the eye. But also that even with a severe disability that will always require 24 hour care his life can still be good and meaningful. // created at http://animoto.com

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Nonprofits & Activism

Tags:

• autism
• Floortime
• non-verbal
• severe-autism
• Surf-Relief
• Breaking-the-barrier
• animoto
• catchpenny

[tozuelke]

I took my two boys with autism to amusement parks, beaches, and anywhere there would be many people, loud noises, and confusion. At first I wanted to pull out my hair especially with my little escape artist but as the months and years went on it got easier. They now do not cover their ears or even have melt downs. I do not have anyone looking at them differently because of their behavior. The best part is they actually enjoy those places now and demand to go there often.

[nezumi35]

@tozuelke That's so good to hear. I have got a lot better at taking Archie out into busy places with other people over the last year. He still shouts a lot if we hit a queue, but he's learning and can wait for short periods now. I haven't been brave enough to try the cinema but we've done regular horse riding now, not just the specialist sessions and we do a lot of supermarket trips etc.

[cforbes1000]

Hi! love your video of your adorable son, i want to make one of my own autistic 3 yr old son to continue show that the face of autism is beautiful :-) Did you know that Odeon cinemas have started to show Autism Friendly screenings: once a month, they keep lights on, turn sound down, no trailers or adverts, you can wander round, make as much noise as you need and take your own food in. Ring your nearest and ask for the Accessibility team :-)

[LatigidGolana]

SOOOOOOO AWESOME!!!!!! LOVED IT! I have Twins with Autism and it is also pretty severe....they are communicating better but the sensory overload keeps us from doing alot of this kind of stuff....but not because I care what otheres think but because they both go running off in seperate directions. or it will seem as if they are being tortured because of the sensory issues...but when they are stimulated to just the right levels you couldnt tell they are autistic. BRAVO again!!!!!

[angelablak]

your son is beautiful sometimes he may be hard to cope wwiht but embrace it always with open arms because even though it may be a struggle the struggles are where you will learn the most and have the most memories whether there good or bad

[morrisseymaid]

I know this little boy, he attends the same facility as my son and he is most definitely a child with very severe autism! Photographs can be deceptive as these children look so normal and the fact that this post is meant to depict what they do as a family does not mean that everything they do is without massive difficulties. Sorry CJEB4 but you really have this wrong! Autistic families should stick together and support one another, not criticize........

[AutisticWhoLives4God]

That was absolutely beautiful and very well done. I like your perspective.

[nezumi35]

@jeffstwiga Wow- I am so impressed you went to the cinema. I have a feeling my son would love it, but I have always been too scared to try and deal with the waiting, and I worry he would try and press his nose against the screen (as he does with the tv :-) ). Although mainly I worry about the other people. But you have inspired me and when the next suitable film is released we will give it a go. You are right- our children do deserve the world.

[jeffstwiga]

@nezumi35 She had a wonderful time watching Gforce. I say keep trying. We still take her to resturants and zoo etc. Sometimes with success sometimes not. Never give up trying to expose your son to the world he deserves the world and the world deserves to know him. I say make the world see him not the autism. Thats what I do with my daughter. I'm a single mom and I understand how hard it can be dealing with the outside world while dealing with our special childs world

[jeffstwiga]

@nezumi35 I think your a great parent with a wonderful child. and he is blessed that you can see that he is so wonderful. I have an autistic daughter who is 9. She couldn't speak until 2 years ago. She has very limited speach but now can answer questions like whats your name where do you live whats your telephone # etc.(functional phrases/questions) she to bites herself and she used to "headbang". This past July she went to the cinema for the first time(we prepared the management ahead of time.