Silent but... (severe autism)

[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

[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.

[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.

[kgaccount]

Nice video. It's upbeat. I agree with CJEB4 your son is blessed with not being "severely autistic". He appears, in my opinion, to be moderate. That's awesome! U seem like a great dad. Your son is adorable. He's in good hands. Nice to see PECS works for him. When was he diagnosed? Does he have other issues? My son has seizures and self injury and autism. That's why from parents like me, it seems the word severe is different. No offense, just our reality.

[nezumi35]

I think some are misunderstanding this video. Yes my son is severely autistic. He might looks normal but he has one word, he doesn't understand verbs, he cannot go out on the street without someone holding onto him and never will. Of course he self injures - he bites and hit himself daily - and if you look at another of my videos you will see several windows that he broke with his head for example.

That's not the point. The point is DESPITE that severity he can still have fun. With help.

[kgaccount]

Totally agree....that's always the challenge, Getting help. It's like the system just gives up on our kids and throws them to the wolves...they don't understand what it's like to have serious sensory issues rooted in autistic disorder so they give us the bare minimum and we have to fight and fight and fight for every little thing...

[nezumi35]

Yes exactly. My son was refused speech therapy because he was 'too severe' and 'there's no point because he doesn't understand anything anyway'. And special events make such a huge difference. The surfing is held annually for children with learning disabilities and is accessible to those with severe LD's. We also go horse riding but need three adults one to lead, and then an adult standing either side. My son loves that - we need more of these events. Makes such a difference to quality of life.

[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.

[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

[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.

[nezumi35]

@kgaccount Sorry I forgot to answer your question about his other issues. He is diagnosed with severe autism severe learning disabilities and dyspraxia. He cannot write his name (he can't write or draw at all). I think his biggest difficulty is his lack of receptive language. His memory is very good. But without language (he didn't understand yes/no until last year) then it's hard to learn. Will dig out his CARS score later- but it's towards the lower functioning end of the severe range.

[nezumi35]

@kgaccount Sorry some more answers. He was diagnosed age 2. He's finally seen a neurologist and been referred to a geneticist and various tests are being run to consider things like mitochondrial cytopathies (he has some potential signs). He has some odd things he doesn't understand- for example is terrified to see a TA from school outside school, or someone from his respite centre in school. I don't think he realises they exist away from the environment he sees them in normally.

[snigidah]

This is a great video! I love the positivity- a diagnosis of autism usually means that there are difficulties. I think it is great when a parent chooses to show the good instead of the bad. Beautiful. Makes me want to hug my little guys.

[SassorMcJames]

Beautiful!

[CJEB4]

My son has severe autism and is always on the fridge getting into things or on top of the tv or the back of the couch throwing my pictures to the floor, playing in the sink, he doesn't talk or use sign or pecs and he is 5 He also hits himself in the face and head and bites his hand until it bleeds. You are lucky, and I don't think you should say your son is "severe" when he can communicate, it gives the wrong impression of kids like mine making it difficult to get him the help he needs.

[nezumi35]

Part one: At the age of 5 the top of the fridge was one of my son's favourite places too. It probably still would be if he could fit! He learned to use PECS when he was about 4- this helped us understand requests and dramatically reduced screaming. However, his biggest breakthrough came at 7 when he FINALLY learned to imitate.

[nezumi35]

Part 2: With imitation a lot of activities (such as the surfing you see on the video, but also horse riding) developed meaning for him so making them accessible. It also meant he learned some Makaton. He has about 8  now and uses them often to tease (e.g signing 'train' to my mum then laughing as he knows she cannot find the trains for him on YouTube).

[nezumi35]

Part 3

So he's 10 years old who can use PECS to request, who can use about 8 signs and who has one word ('mummy'). He has challenging behaviours (yes including hitting his head and covering himself in bruises from biting and punching - these are MUCH reduced when he is kept busy - hence my comment about needing help). He will require 24 hours care for the rest of his life. I'd call him severe. Certainly everyone else does.

[nezumi35]

Part 4

He can still have a good and active life. That was my point. He *is* by any measure severe, and yet, he can do fun things. i.e. he is not someone just to be written off, rather someone supported to access as much of life as he can.

A long reply. Learning to imitate unlocked a lot of the world for him.

[dianewerker]

Sad to see such a negative comment when you don't know this family. I do know them and their son is fun, lovable and IS severely autistic. I too have an autistic child who used Makaton intially but can now speak (she's 12), and she also bites her hand until it bleeds. My friend is committed to helping her son to reach his full potential and I think this video helps to show the joy he experiences in his life.

[drmaier]

no that's not right. It's not up to you to say who is "severe" and who is not... and then on top of that to add value to that "severity"... just makes it even worse. You missed the message - this boy's life has great meaning, he has found his own way to do things and his accomplishments deserve recognition. Videos like this inspire the same attitude in other parents whose child has ASD, no matter where they lie on the spectrum.

[CJEB4]

Just saying, if this is severe what would you call my son? You obviously have not seen a child with real severity I also have a child with aspergers and this to me should be labeled more in that category, it's misleading, I search day and night to find others like my child, to little avail. There have been two on youtube so far. It's certainly not up to me to say anything at all, just stating an opinion like you, that's all.

[nezumi35]

@CJEB4 I think you are getting confused about the message here. I could do a 'my life is terrible' video and do the 3 hours sleep, the self injury, the no speech, the lack of understanding of language, the challenging behaviours, the broken windows. In this video I chose to show a different side. My son has one life, whether we like it or not it's a severely autistic life so we may as well make the most of it. Severe autism doesn't stop you surfing etc providing special events are run.

[jsarbora]

He's beautiful and there's obviously lots of love in him and with you

[MsSmurfette72]

This video is brilliant! It show autism in a different way, and your son is beautiful. Well done.

I have a question, who sings the song? I love it.

Thanks.

[nezumi35]

Song is by a band called Catchpenny. :-)

[MsSmurfette72]

This video is beautiful! It shows autism in a different way.

I have a question if that's ok? Who sings the song? I love it.

Cheers. xx

[Tasneemqureshi]

My son is 3 and non verbal. No one can tell me if he'll stay like that will talk eventually...I am really frustrated!!!

School is not doing much to teach him pecs either. I have a 10 month old and can't seem to focus on teaching him myself. How did your son learn pecs??

[leopardchucks666]

I'm crying like a baby.... It's wonderful to see that you expose him to many experiences. Some parents shelter their autistic children and deprive them of experiencing new things. From the pics, I am guessing that your son is hypo-sensitive...seeking stimulation. My son is that way as well. FEARLESS! It can be a blessing. Good luck to you and your family! That was beautiful.

[nezumi35]

Oh yes well spotted, so hypo-sensitive and so sensory seeking..... ! It's a struggle to keep up most days. Absolutely fearless.

[NadezhdaRozagy1]

i had a selective mutism between 9 and 13, i think it may have been because of bullying at school. I have Asperger's and talked early but then didn't talk much apart from screaming my head off and crying without tears, 9 onwards. i don't know why that was. i also loved to walk on tiptoes for hours and could only recite poetry or learn stuff while jumping up and down. i make myself dizzy just thinking of myself as a kid - gosh, i was active. everyone always said i should have been a boy.

[obamavictory2008]

That's beautiful.

[LittleMissPrim]

Thanks for posting a link to this on MN JJ, i remember seeing it before, i have looked for it since and was unable to find it!!! added it to my favs now xxx love to you all xx

[1210donna]

oh I loved this. Archie's personality is somewhat like mine. A warm buzz junkie. I got functional speech around age 9-11 before that it was songs, jingles, donna-isms. I got functional speech through gestural signing and representational objects because I couldn't visualise anything internally when hearing words. Shine on Archie!

[babycakes6571]

Wow Mouse, your whole family is so wonderful, that video is amazing, it made me feel so emotional, such a positive statement xxx

[saneone21]

Brilliant.

[caligirlegypt]

Your video made me cry. I have a son with autism as well. He has made great strides. He says: "I love you mommy" -its wonderful to hear that. I wish our government would recongnize this is an epidemic!!!

[brendaj1964]

Autism is so misunderstood. I've never had contact with anyone with autism, but you've shown me that he's not just sitting in a corner, silent and "in his own world." He's not someone to be pitied... you've shown that he has joy and love in his life. I like how you said that he just experiences life differently. Inspiring. Thank you.

[missangie29]

Wow i loved this video and just so positive and its great to be this way, Thomas was totally non verbal up until just resently now he talks in his own way and signs ..keep the faith and your little man surprise you as Thomas did us...his new favourite word is 'No Thankyou' and its lovely !

Take Care x

[adambarrett]

Thank you for psoting this short video of your family. Your son is georgous. Your words inspiring.  Thank you again.

Sandra

[RemisFrosty]

What an amazing video. Thank you for your insight.