Woman in sainsburys with autistic son....

[Pinot4me]

I joined a queue in sainsburys earlier today. There was a woman with a baby in a buggy (probably about 2 yrs old) and a boy of about 7/8. The boy was really agitated and playing up and the mum asked me if I would mind queuing at a different till as her son was autistic and was having a really bad day and he hated having people behind him (or crowding him). Tbh, I didn't mind moving at all as I could see she was struggling, so went to the till on the next aisle. The same thing kept happening as it's a big, busy sainsburys and, for obvious reasons, the queue she was in was the shortest. She politely asked everyone who joined he queue to move away. There were 2 people in front of her...I just can't believe that nobody let her go in front of them...she was really struggling and the boy was getting more and more distressed. I've never come across anything like this before...the cashier could see what was happening. Should she have offered help? It made me realise that we take he simplest things for granted. Surely someone should have offered to let her go through first? I definitely would have done if I had been in front of her...would you?

Ds1 doesn't understand reward charts now (at 15). As for the supernanny advice about managing obsessions (which involves lots of talking and conversation & needs a high level of understanding) forget it - we're nowhere near that. It's talking about a completely different degree of autism.

We can break obsessions/compulsions but have to do it physically, hold hands over light switches, lock doors from the outside so toilets can't be flushed, lock siblings rooms so windows can't be climbed on. To break the park routine I would have had to??? Dunno hold ds1 down - then what? Go home? Why do that in a park that's empty 99% of the time? He was nowhere near social stories then - if anyone has ideas in how to stop a 3 minute routine in a profoundly autistic child with no understanding of language I'm sure many parents would be delighted.

Whoever said the thing about sometimes stinging etc has to be engaged in I agree. At the moment ds1 has a real need to run very fast then jump heavily on firm surfaces. I see no reason to prevent him doing this providing the area isn't crowded (he rather likes an empty supermarket aisle for this) especially as it self regulated him. And his need to do it is very strong so I'd have to wrestle with him (he's taller than me) to stop it. He does now have the umderstanding for me to be able to say 'wait' and 'it's okay here'. But sorry I'm not going to stop him doing something that helps him
& doesn't have anyone just because it isn't NT. Acting NT isn't a goal for him.

*stimming not stinging

*hurt not have FFS!

This makes me want to cry with frustration. Those who have children able to respond to these techniques - just feel lucky, because thats what you are. Beyond physical restraint these tools cannot be used on a child like my dd whose cognitive and communicative ability just isnt anywhere near us being able to use these interventions. You throw around words like severe as descriptors for your children without seeming to realise that your level of severe would be a huge step forwards for families like mine. And then you use it to tell me what to do - argh! Our children are like chalk and cheese. I ahve tried the harder line stuff, anxiety and behavioural issues out of control, she is unable to cope with this because she cannot to it. Its not just a wee bit beyond her reach and she'll get there with a push. Its a totally different ball game and I cant turn my child into something like your child by treating her as though she was yuor child.

I have two children with severe ASD and you have to teach them how to deal with normal day to day life. They can't be independent and function as adults if you don't.

Apologies, I haven't read the whole thread. Some children with ASD (my own included) will never be independent and able to function as adults. He will never verbally speak and will never understand waiting in a queue no matter how many times we go through the process. My ASD child is now bigger and stronger than I am and for years we have tried helping him to understand about normal day to day essential things but he still cannot cope in supermarkets or doctors surgeries or any medical environment. We still need to buy food but during school holidays I have to wait until my husband comes home from work so I can go and buy a loaf of bread.
It is very naive and quite insulting to think that every ASD child can be trained to understand shopping trips etc. some teenagers with ASD have the mental age of a toddler, the communication skills of a baby and the social skills of a person with ASD.

Following supernanny' s advice :o

Misunressonable, we have got the point where I can park outside the local co-op or bp garage and run in to buy something. If only I had of tried harder when she was younger.

I can leave ds in the car outside the shop whilst I run in for a bottle of milk but only if ds is wearing his Houdini harness so can't climb into the boot space / reach buttons on the car / try to escape from the car (we have child locks on but only in the back obviously). Even with the Houdini it's still a big risk as ds is strong enough to break the window and cut himself.

You've reminded me of the years when I could not buy petrol if I was alone with ds1 as I could not leave him in the car (he'd run off/take off the handbrake/hit his head in the window...) & could not bring him in with me as he couldn't queue. I used to not be able to pay for anything as I couldn't let go of him as he'd clear off. My favourite buy was a Crelling harness because I could hook it through to my elbow giving me two hands to pay for things.

It's when you look back you realise what huge progress has been made, even though we're still nowhere near the stage of being able to use supernanny techniques.

The other problem of course is that it doesn't take much to go backwards. Last summer ds1 was ahead of where he is now. Nothing to do with me, everything to do with external agencies cocking up & affecting anxiety levels.

This is a long post because I will not be posting on this thread again.

"Has it crossed you mind that perhaps it was less your marvellous parenting and more the fact that your child was less severely autistic? Perhaps you weren't aware that the vast majority of children develop and mature as they age?"

Please copy and paste exactly where on the thread I have claimed or posted that I have marvellous parenting or used the words "namby-pamby" parenting.

I haven't whatsoever. I have provided a link to a website that backed up (with a slight variation of technique) my first post on this thread.

My child has just turned 18, he last reassessment was 18 months ago for educational purposes as his original assessments were done at primary school and in Year 8. I pushed for this assessment as I felt his ASD was not being dealt with as much as his other issues. The outcome was that his autism was more severe than first assessed. It also picked up other things that we were not even aware of.

On the back of that, DS1 then received additional help at college and has participated in a life skills/independence training, again we would not have qualified without the new diagnosis. He also had a travel companion for the first term.

I think that in the last ten years the difference in how children are assessed the support given has changed dramatically. When DS1 was first assessed I had OTs advice, physio and an in-school team that visited once a term. I think that if I was to have assessed now it would be totally, totally different. Perhaps the onus would be more on his "support" team to provide me with information. We were left rather in limbo land and with the exception of an amazing local autism group run by OTs and physios. We were told to be proactive in our approach, we all supported each other and to date our children have done really well.

I re-read the entire thread last night in bed, I sat there a bit tearful actually because I have been exactly where so many of you are. I dealt with refusals, obsessions, meltdowns, smearing, eating problems, aggression, lack of speech, physical disabilities, stimming etc., DS1 also has dyspraxia, aspraxia, dyslexia and social anxiety. Believe me, I have dealt with a huge amount in the last 18 years. Everyday was a complete battle as I had three other under fives to juggle as well, my days would be 20 hours long. No family support, no respite care available or offered.

Ten years ago that could have been me as the Mother in the supermarket, my DS1 was exactly the same as the one described in the OP. Fourteen years ago that would have been my DS1 at the park with a fixed routine of the swing etc.,. So I have posted after reading the OP and thinking "been there done that" with the ability of having a "then and now" perspective.

I took the approach with DS1 to help not just him but my entire family and I am so very glad that I did. Don't flame someone just because they come to a thread with different ideas, different approaches and an entirely different point of view. I have not claimed on this thread to be better than anyone else, I have just simply put my view across.

SuperNanny knows nothing about ASD

It isn't about not trying hard enough.

I have two girls with AS. I can pressurise them to conform and concentrate all their energies on pretending to be normal. their inability to express themselves in the school environment forces them to do this anyway.

However, their anxiety is so severe that they cannot cope with this stress and it has damaged their metal health. DD2 is extremely academically able but has full time one to one TA support on top of a place in a specialist ASD unit and will be attending a small independent school next year funded by the LA. Her statement is all about making the environment suit her because making her fit the environment all the time harms her.

What Supernanny fails to acknowledge is that children with ASD are more different from each other that NT children. Nothing just works. An individualised approach is the key to supporting children with ASD? if you do not take that, you risk doing more harm than good.

Each parent finds out through trial and error how the get the best outcome for their child. What works for one may be disastrous for another, even if they appear to be very similar.

Ham, I don't think it's the been there done that. Autism and severe learning disabilities together are a completely different kettle of fish. I was the person at the checkout too, I still am. My daughter is 15 not a small child. The supermarket is a complete sensory overload for her. Like lane is, my main concern is keeping her safe and if that meansxwalking the correct way round, then thats what we will do but tbh I avoid it as much as humanly possible because I find it far too stressful.

I have to be honest, as a neurotypical child I didn't spend a huge amount of time in the supermarket either

Oh for god's sake my son is FIFTEEN (I'm the one who had the five year old in the park with the fixed routine). He's in the same cohort as yours & will always require 24 hour 1:1 or 2:1 care. Your child is way ahead of mine and your techniques would not have worked on him - they still won't.

I'm sure your links & advice are of use to some with higher functioning children, but please recognise at least that you are not in the position we were and the severity of his autism is nothing to do with the way he is parented.

You haven't actually said how ( or why) you would have broken a 3 minute routine in an empty park either - the supernanny techniques inc

involved discussion & reasoning - not possible.

My favourite buy was a Crelling harness because I could hook it through to my elbow giving me two hands to pay for things.

We have a crelling harness (2 actually, a walking one and a vehicle one- the Houdini or number 31a). I still can't take DS into the shop with me because even with the harness DS is too strong and powerful now that he is bigger than me and I need both hands to hold the harness to prevent him getting free and escaping and sadly the harness doesn't resolve the issue of DS having hands and being able to knock things off shelves or lash out at other members of the public. I can handle taking a physical battering myself (despite the feeling of humiliation and numerous bruises) but I can't handle other people being harmed and I won't put elderly and young people at risk if I can help it.
Even walking down the street with DS and the assistance of the crelling harness is a big risk because he is powerful enough to pull me into the road with I'm whilst I am holding onto the harness.
Sorry if this sounds like I'm having a pity party as I am not, I'm just trying to Mae some of the more ignorant people realise that some children really do have very exceptional needs that can't be resolved with planning, preparation, numerous trips to familiarise or super nanny techniques. It is only when you live with the extreme end if the scale on a daily basis that you really understand. Other than myself and my husband the only people who truly understand are the people at my sons SN school because they often need three members of staff to manage my son safely when he tries to abscond or lashes out (and that can be many times each day).

I think you had better hide this thread Ham because despite putting your POV quite clearly no one is going to listen and are intent on dissecting your contribution sentence by sentence in a negative way.

I understand what you are saying is what worked for you and your DS. It may be helpful for some parents with ASD children to read what you say and use your methods. Again for some it won't work at all. I can't see criticism in your posts, just your experience . Your experience is just as valid as everyone else's and is a bit more optimistic for parents of younger ASD children. Many autistic children can live independent that is why it is a spectrum.

Ah yes misdunreasonable - some of ds1's peers are in that situation. I am very lucky in that ds1 stopped running off and learned 'stop' before he became too big to physically stop. So we only had to use the crelling up to about age 10. Providing we keep the anxiety under control so he doesn't start beating me up we're okay (& I am also lucky - and I know it is luck - that he only hits people he knows well). He's never been one to grab lots of things (except food!).

I do know what you mean because some of ds1's classmates/respite mates are in the same situation & yes it's a different kettle of fish again (have had a taste if it this summer with spiralling anxiety from respite breaking down - if it doesn't calm down in September we're in a different place than we were).

Well there was a direct criticism of me (for allowing my then 5 year old son to engage in a 2 - 3 minute routine at the park) so I feel entitled to point out why the suggestions would not have worked in his case.

Of course when my DS was little trips to the supermarket were much easier and it is something I did weekly with him despite DS not wanting to be there and making it plainly obvious in his best ASD way. But when he was 6 years old I could pick him up and physically remove him if he was lashing out. I could prevent him from running off and getting harmed. I could make him wait in a queue. I could keep him calm enough to complete a shopping trip.
Now that he is well over 5 foot and weighs 8 and a half stone I cannot pick him up and remove him or prevent him from absconding easily. I am only just over 5 ft and weigh roughly the same as DS.
I have picture schedules and programmes on the ipad to explain trips to the supermarket etc but it makes no difference if DS decides he doesn't want to be at the shops (which is every time).

You don't sound like you are having a pity party at all, all our realities are different

Actually when ds1 was small I never found the 'optimistic' - just do x- messages very helpful as I'd try them, they'd be way way way over his head then I'd wonder what I was doing wrong.

It was then, as it is now, far more helpful to have people around us who understood the severity of his autism and adjusted their interventions to his level. Then we saw progress. That led to optimism far more than seeing everyone steam past him easily doing things that he couldn't begin to understand.

And agree with owllady - it's not a pity party. The Crelling harness was a godsend for me - bit if I tried to use it now to physically restrain ds1 I think he'd knock me over!