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5 year old son with Moderate Autism - Does it get easier??

18 replies

Givemeabreak22 · 23/11/2013 16:19

I'm struggling here. I have a 5 year old boy with moderate autism who was diagnosed 18 months ago.
He is beginning to say words after you say them to him and can repeat finally after me. But we are only at the 1 word stage and he uses my hand (or screams) to request or ask for things. i still feed him using a spoon and engaging him in anything is a nightmare. Thankfully hes toilet trained- this took 2 years.
He has support at school with a brilliant ta and is fully statemented. school are really positive and he has intensive speech therapy and ot so i cant fault our lea.

But days like today, when he just wants to throw balls around and stim or use the ipad to watch a cartoon (reward and very restricted), i just feel like hes never going to learn to speak, read or write.
I feel so far awy from normal mums.
Hes my only child, we couldnt do this again.
im so sorry for my rambling post.
i just wanted to know if it will ever ever get better from other mums whose children have asd? (i'm aware the variation is asd is huge).

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sickofsocalledexperts · 23/11/2013 16:36

Yes it does get easier, as they grow out of some stuff (and my boy is at the severe end).

But you mentioned that your child is now imitating words and saying a few?

I was told something by a v eminent professor of ABA that I wanted to share with you.

He reckons that if an autistic child can imitate words, you can get them talking functionally, but the best and quickest way he has found to achieve that is what ABAers call the "echoic to mand" transfer.

Here is how he described it, with an anecdote from his own practice:

He was visiting a family whose boy had had only echoed speech for years.

As he talked to the father, he noted out of the corner of his ear that the boy was repeating or echoing the occasional one of their words, eg "swim".

He decided to go swimming with the boy. At the side of the pool, with the boy all excited about going swimming (his major love) the prof stopped him, stood in front of him and said "say swim" (but the "say" bit quieter, so as to be faded out soon). The boy echoed "swim" and they both jumped in joyously.

Then, out they got again, to the boy's disgust, but he got his reward of jumping in again when he echoed "swim".

Third or fourth time, Dr P did not prompt "say swim" at poolside, but just pointed at the boy's mouth expectantly. The boy said "swim". His first independent mand, or request. Immediately they both jumped in and had a long, joyous swim. Given that reward, next time they got out and stood together poolside, the boy knew to say "swim" again.

The next day he did the same drill, with a different highly-motivating activity - eg "chips". And so on.

Dr Pat ended by saying his heart bleeds to think of how many ASD kids there are globally, with echoic speech, but languishing in schools which just don't know this one simple protocol.

That would have been my boy, had he stayed in his Teacch school.

The mand training was the key, opening up in his little brain the synapse marked: different mouth movements get me different good results (= speech).

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Givemeabreak22 · 23/11/2013 16:42

Thank you sickof.
we use aba and its got us these results with the one words. i went on a course and we do this at home. we also have a speech therapist who practices this form at school - finding teh motivators has been our challenge but im grateful to say that one of them seems to be my voice. we have got my son to count 1-10, repeat some of the alphabet phoenically also using the method you describe.
Hes not in a special school yet because our local state school has been incredbly supportive.
I really dont mean to down grade anyone elses situation as i know how hard it is - but sometimes it really feel like its only me with the severe asd son.
its a tough bad day thats all.

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sickofsocalledexperts · 23/11/2013 16:57

My boy no longer does any of the throwing, or breaking, or pouring out, or screeching - looking back, some of it was that he was a 5 year old boy, not an autistic boy iyswim?

Great that you are doing ABA and have a supportive mainstream school - that combo is truely rare so you have hit the jackpot.

Aba, melatonin, swimming, trampolines (in and out), boundaries - these are what worked for us.

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theDudesmummy · 23/11/2013 17:13

I have non-verbal boy too, and behaviours can be very tricky at times (although the most severe/self-harming ones have improved a lot with ABA, we still have plenty of pouring, climbing and others). I am hoping things will improve more, but like you I do worry and have have some bad days when I just think so this is it, this is the way it is going to be...

However, I had a tribunal yesterday, and one of my pieces of evidence was a video, and it included behaviour over the last eighteen months, The distressed, frantic boy at the beginning of the video was unrecognisable from where we are now. I looked at it lots while I was putting the video together, and thought Jesus Christ how the hell did we survive that? Some days now feel hard but it really was harder then.

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theDudesmummy · 23/11/2013 17:15

PS sickof that is a nice story, sadly we don't even really have echoic speech, just a few syllables at best, so I am pinning my hopes on other modes of communication...we have accepted that speech is probably just not for DS. That's a really hard one to swallow, but you look to the future and try to see ways through...

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Givemeabreak22 · 23/11/2013 17:23

weve gone down the biomedical route with lots of vitamins and minerals - we do the trampolining and the ot sensory diet we incorporate into his life also.
sickof - i wonder sometimes how much is 5 year old behaviour and 5 year old autistic behaviour too. i pin my hopes a little on the latter tbh.

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tryingtokeepintune · 23/11/2013 17:32

3 years ago, at 9, ds could read 25 words according to his teachers - and was doing soooo well.

Last June, he was assessed to have reading level of a 8 years old.

Great that you have the support and skilled staff to help you. You are on the way there.

Ds used to throw things around, over the fence, stim etc. He does still do irritating things but is nowhere as challenging. We can leave him in a room now. The key was his ability to communicate, to tell us when he was frustrated, hungry etc. Also, managing his Sensory Processing Disorder helped calm him a lot.

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Givemeabreak22 · 23/11/2013 17:33

thedudesmummy now where you are in your headspace is where i would like to be. Indeed i need to look to teh future for alternatives too and keep a positive open mind.
... its tough to swallow though.

On a slightly different note, i sometimes find my mind wondering, much like those books i used to read as a child whereby you had dto turn to page 66 if you thought charlie should go through the gate or turn to page 69 if you think he should turn back..

Its crazy thinking and really not productive, i dont even know why i'm telling anyone that really. i think i need some counseling to move forward with what i have, i know what to do, i'm just allowing my mind to sink sometimes- craving positive stories from everyone...sorry, im rambling.
its just nice to talk!

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Givemeabreak22 · 23/11/2013 17:41

my son still throws things..we went away in the uk and stayed in a holiday let which had a balcony above a restaurant..i didnt know this at teh time of booking.. teh holiday was a complete nightmare.

thankfully the balcony was not climbable and far too high but it didnt stop my son throwing a small cantaloupe melon over the edge right below on to the restaurant. i'll never forget the look on the guests and the waitress's face when she marched up to our door with the squashed melon on her silver platter..

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Givemeabreak22 · 23/11/2013 17:43

we only have at best this academic year for his language to come on - the school have said its vital now his language comes otherwise it will be ss for us too and ive looked at a few so im ok with that prospect.
ramping up our aba and worktime in a bid for the 2 word sentences to come is our priority.

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sickofsocalledexperts · 23/11/2013 17:48

My dsd was diagnosed with mild autism and is in fact now doing 4 A levels and looking at uni options

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Givemeabreak22 · 23/11/2013 17:59

thanks sickof its peoples real life stories like this also i get alot of positivity from.
especially when their children were different at 5.

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tryingtokeepintune · 23/11/2013 21:09

At 5 school was surprised when we told them ds could say a few words. Not sentences but 2 word sentences.

He is now 12 and argues with us. Not like a 'normal' 12 y.o but with logic and force eg. tonight he said, 'you don't always get to decide xyz, sometimes it is my turn.' We never thought we'd get this far and now I am not letting anyone set limits to what is possible.

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salondon · 25/11/2013 02:15

Dude's mum, Give me a break - we are at a vocal stage too. However, we are using vocals as Mands now(it started with eye contact and then signing and now it's signing + vocals).

I must be too optimistic, however, I am still hoping the words will come(she is 4y2m).

Why would they send him to a SS if the words don't come faster? I would like to understand this if you don't mind.

SickOf - great example. Sean Rhodes used something similar to teach the importance of signing to my daughter in June this year. It took her 2 minutes (thanks to his technique) to understand that signing gets me my reinforcer(which at the time was standing on top of the dining table and seeing small pieces of paper drop from the corner of her eye).

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theDudesmummy · 26/11/2013 12:25

We have been working (with Sean Rhodes) on vocals and signing for eighteen months, with some success sure, but have a very limited repertoire of signs still (and even more limited repertoire of sounds, as echoics or mands). The rest of his motor functioning seems good so not sure why this is, but we have not given up, just thinking of contingency plans.

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fanjoforthemammaries7850 · 26/11/2013 12:34

It has got easier for us now DD is 7. And has.got easier at same time for other friends too.

She can go to more places, comunicate more and is much more sociable and relaxed.

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Chasingmytail17 · 14/10/2018 21:32

Resurrecting this old thread wondering if givemeabreak22 has an update. Her DS must be 10 now and mine is 5 so feeling where she was back in 2013.

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121314mum · 20/10/2023 10:36

@Givemeabreak22 @Chasingmytail17 any updates on your little ones guessing they are not so little anymore but as you probably remember I am in the same position you were many years ago and would love to hear how things are now

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