RE: Re: Ten Things To Know About Autism - FAQ

[Guest guest]

Hi Sara.I always say do what works best for you and that you agree with. It's different for everyone and each affected individual. We did have a bad experience with ABA at the start but it was mostly because of the case manager, we moved on and found a combination that worked for us!

We welcome debate, opinions and discussion because that is how we learn and move forward - thank you!Cheers.

 

I know this is a debate that will rage forever but I object so much to

ABA in all its forms that I feel I have to say this. I really wish you

weren't recommending it. We did it for the first three years following

Tom's diagnosis and I firmly believe that we made his autism a lot

worse. If you see autism as being primarily a problem of isolation, poor

communication, a relationship disorder etc etc it makes no sense

whatsoever to spend time teaching 'static' or academic skills. Even more

importantly it makes no sense to make human beings appear as very

demanding and difficult to get one with (and reinforcing this by giving

the message 'if you get past me and my demands you will be rewarded with

your isolating 'stim'.) These academic skills should be acquired later

(as with typical children) once the fundamentals of communication are in

place (and by this I mean things like being able to enjoy other people's

company).

I regret it so much and when I watch videos back it keeps me awake at

night. I hate seeing it still recommended. I'm happy to discuss any of

this further but realise not everyone agrees with me.

-- isybeeautism.com

[Guest guest]

Dear Thank you for expressing so clearly exactly what I think are the problems underlying programmes such as ABA.. I agree 100% that fundamentals have to be in place first.. and this applies irrespective of age...The rigid demands of these programmes even less rigorously implemented can cause anxiety and stress for the children.. and for those with  additional Neuro problems.. may in my opinion increase seizure activity as stress and anxiety often are a key to setting off seizures.

I wonder too if this is why there are reports of plateauing and levelling off with some of these more demanding educational programmes?Every child is different and our approaches to parenting and nurturing our children probably differs too.. it just runs counter to the principles of education being greatest when learned in a relaxed, calm and fun way.

Tracey

 

I know this is a debate that will rage forever but I object so much to

ABA in all its forms that I feel I have to say this. I really wish you

weren't recommending it. We did it for the first three years following

Tom's diagnosis and I firmly believe that we made his autism a lot

worse. If you see autism as being primarily a problem of isolation, poor

communication, a relationship disorder etc etc it makes no sense

whatsoever to spend time teaching 'static' or academic skills. Even more

importantly it makes no sense to make human beings appear as very

demanding and difficult to get one with (and reinforcing this by giving

the message 'if you get past me and my demands you will be rewarded with

your isolating 'stim'.) These academic skills should be acquired later

(as with typical children) once the fundamentals of communication are in

place (and by this I mean things like being able to enjoy other people's

company).

I regret it so much and when I watch videos back it keeps me awake at

night. I hate seeing it still recommended. I'm happy to discuss any of

this further but realise not everyone agrees with me.

[Guest guest]

Same here with my not so little chap, he needs direction and to be taught in a structured manner, to the point I prefer what I know of ABA to VB but that might just be the very dodgy provider we had.

actually doesn't like people tiptoeing around him, he is a child who will find unwanted activities if he is understimulated or given too much free choice.

His independent play skills have increased no end since we taught him in very small steps and very structured way how to play with toys, the VB pairing was a complete waste of time, he would turn round and say "weetie", our supervisor [use the word really loosely] insisted pairing definitely works, wouldn't have it that was only in it for the sweets.

Vicky

Re: Ten Things To Know About Autism - FAQ

This is an interesting discussion. I resisted ABA with all my heart and soul - particularly when they were demanding 40 hours etc. However, I did find that using ABA methods with my little chap worked well for him (it was me they didnt work with - lol!) - but we used structured 'table time' within a looser framework and once we'd taught him what happened when he came to sit to the table we realised he needed the intense structure and was really interested and excited to be given things to do. he only ever does structured work now when HE approaches the table?

But it was very useful for us that we tried it.

We used Growing Minds Programs and they built a programme around him with the best bits of all the different methodologies - and we did need quite a bit of ABA to start with.

Having said all that we are a bit 'off the wagon' at the moment and we are probably ready to start looking at everything again...... when I get that cloned body double and a wad of cash!!

Mel x

[Guest guest]

Dear AnitaThis is so beautifully expressed.. because every child NT or other does have their own pattern and steps to learning.. and I agree it is about sensing what may work or offering something and seeing if it connects or helps... and if not backing off and offering something else...learning is exciting when it is not forced.

I think too that we are surrounded by data- especially from Health Visitors about what milestones should be met.. and this is not what happens... one of the brightest people I know did not speak until she was three.. her process of learning was a typical however given learning at her own pace and interest level... she did really well.

ThanksTracey

 

Maybe I'm slower than most people, so it took me a while to figure this out, but all therapy does the same thing, no matter what type. It takes one aspect of how we naturally are with children, and then isolates, emphasizes, and often exagerates it, excluding the other ways we would naturally behave with children.

So, I'm not against any therapy. Rather, I am for using some combination that makes sense for the child. My son is really good example of needed a very mixed approach. It's what we do and he feels better, I feel better, and the therapists we have work to their own strengths as well. So we use VB, RDI, Floortime, Intensive interaction, plus music therapy, swim therapy, you name it.

What I find really surprising and dismaying about how long this took me to realize was that when I was teaching, I automatically took this mixed approach, adapting to each student based on what they needed. And these were big kids in high school--even with adults teaching at college I did the same. Why on earth I didn't do this with my own child after he regressed into autism is a testament to the hard-line scare tactics/wild promises, etc used by many professionals who advocate for their own approach. Plus my own lost confidence I suppose, watching my son disappear.

Anita

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> Same here with my not so little chap, he needs direction and to be taught in a structured manner, to the point I prefer what I know of ABA to VB but that might just be the very dodgy provider we had.

> actually doesn't like people tiptoeing around him, he is a child who will find unwanted activities if he is understimulated or given too much free choice.

> His independent play skills have increased no end since we taught him in very small steps and very structured way how to play with toys, the VB pairing was a complete waste of time, he would turn round and say " weetie " , our supervisor [use the word really loosely] insisted pairing definitely works, wouldn't have it that was only in it for the sweets.

> Vicky

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> This is an interesting discussion. I resisted ABA with all my heart and soul - particularly when they were demanding 40 hours etc. However, I did find that using ABA methods with my little chap worked well for him (it was me they didnt work with - lol!) - but we used structured 'table time' within a looser framework and once we'd taught him what happened when he came to sit to the table we realised he needed the intense structure and was really interested and excited to be given things to do. he only ever does structured work now when HE approaches the table?

> But it was very useful for us that we tried it.

> We used Growing Minds Programs and they built a programme around him with the best bits of all the different methodologies - and we did need quite a bit of ABA to start with.

> Having said all that we are a bit 'off the wagon' at the moment and we are probably ready to start looking at everything again...... when I get that cloned body double and a wad of cash!!

> Mel x

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[Guest guest]

Hi All

Alot of you will know that i have been running an ABA program for my 6yr old for the last 3 yrs (and am now home schooling him using the principals of ABA). I started this literally months after my son's diagnoses basically because a friend told me about it and at that stage i really wanted to do something (anything) to help my son and mainstream didn't give any help at all. I can honestly say it has been brilliant for my son, he enjoys learning and has learnt so much through his ABA program, i have a fantastic (independent) Behaviour analyst and i definitely agree that is a must. I have never had any moment in the last 3 yrs where i have thought that ABA is not right for my son, that said i dont think it addresses everything and have felt for the last few months that something is missing. My son is academically doing very well but social and play skills is where he is still lacking so i am now starting down the path of play therapy, i will still do the ABA (because it has worked well and continues to do so) but will work the play therapy in 50% of the time. I am doing many other things too TST(we finally got sleep after 5 & 1/2 years), cranial osteopathy, Hemisphere OT specialists, the listening programme (we are on wk 10 - this has also been amazing for my son) he has been GF/CF and on supplements for over 3 years and a few weeks ago i decided to switch over to full SCD (without the dairy) and we have over a year of chelation rounds under our belt (something else which i feel has really helped my son) we also did 10 dives of HDOT, the first 5 helped my son get rid of his dreadful candida which manifested itself as weeping, itchy, bleeding ezcema.

I don't believe you can categorize our kids as we all know about vaccines, that one size doesn't fit so why should one size of a certain therapy fit, our kids are all individual and as parents it is our job to find out what works and what doesn't, i have been very lucky, i have spent alot of money but it has all been worth every penny, i wouldnt change a single thing (well maybe, i should've been brave and started chelation sooner!)

x

To: Autism-Biomedical-Europe From: thelifechangers@...Date: Wed, 8 Jun 2011 15:06:33 +0100Subject: Re: Re: Ten Things To Know About Autism - FAQ

Dear

Thank you for expressing so clearly exactly what I think are the problems underlying programmes such as ABA.. I agree 100% that fundamentals have to be in place first.. and this applies irrespective of age...The rigid demands of these programmes even less rigorously implemented can cause anxiety and stress for the children.. and for those with additional Neuro problems.. may in my opinion increase seizure activity as stress and anxiety often are a key to setting off seizures.

I wonder too if this is why there are reports of plateauing and levelling off with some of these more demanding educational programmes?

Every child is different and our approaches to parenting and nurturing our children probably differs too.. it just runs counter to the principles of education being greatest when learned in a relaxed, calm and fun way.

Tracey

I know this is a debate that will rage forever but I object so much to ABA in all its forms that I feel I have to say this. I really wish you weren't recommending it. We did it for the first three years following Tom's diagnosis and I firmly believe that we made his autism a lot worse. If you see autism as being primarily a problem of isolation, poor communication, a relationship disorder etc etc it makes no sense whatsoever to spend time teaching 'static' or academic skills. Even more importantly it makes no sense to make human beings appear as very demanding and difficult to get one with (and reinforcing this by giving the message 'if you get past me and my demands you will be rewarded with your isolating 'stim'.) These academic skills should be acquired later (as with typical children) once the fundamentals of communication are in place (and by this I mean things like being able to enjoy other people's company).I regret it so much and when I watch videos back it keeps me awake at night. I hate seeing it still recommended. I'm happy to discuss any of this further but realise not everyone agrees with me.

[Guest guest]

Hi Mel

I think there are lots of "different" ABA programs out there, Harry has never had 40 hours a week, i just couldnt afford that and now i just dont have the time, also i have never used a timetable, i didnt want to make my son rigid when he wasnt having problems with day to day life, i wanted him to be able to cope with lifes uncertainties, he has never had a problem in that area so i didnt want to start one by making him rigid. Also we always worked our ABA program wherever we were, if we were in the garden on the trampoline, on the slide, in the kitchen cooking, or at the park, any where and everywhere, although we did do certain work at the table.

When you find the solution to cloning a body double and a shop that sells money trees can you let me now so i can do the same

x

To: Autism-Biomedical-Europe From: melthomsett@...Date: Wed, 8 Jun 2011 14:30:16 +0000Subject: Re: Ten Things To Know About Autism - FAQ

This is an interesting discussion. I resisted ABA with all my heart and soul - particularly when they were demanding 40 hours etc. However, I did find that using ABA methods with my little chap worked well for him (it was me they didnt work with - lol!) - but we used structured 'table time' within a looser framework and once we'd taught him what happened when he came to sit to the table we realised he needed the intense structure and was really interested and excited to be given things to do. he only ever does structured work now when HE approaches the table? But it was very useful for us that we tried it. We used Growing Minds Programs and they built a programme around him with the best bits of all the different methodologies - and we did need quite a bit of ABA to start with.Having said all that we are a bit 'off the wagon' at the moment and we are probably ready to start looking at everything again...... when I get that cloned body double and a wad of cash!!Mel x:)

[Guest guest]

Definitely up for the play dates Mel, would be great in Summer holidays as Harry's gymnastics, football & swimming lessons all stop as they are term time only, luckily for us one of our tutors is going to take him swimming (she used to be a swimming instructor), so in the holidays he will only be left with horse riding but we have a 11 yr old who is just starting to come round to be Harry's "buddy" but it will be great to have some play dates too, can't wait to meet your two beauties, roll on the summer.....

V.exited about the conference, so great to meet up with you and everyone else and meet a few people from here who i havent met yet.

x

To: Autism-Biomedical-Europe From: melthomsett@...Date: Wed, 8 Jun 2011 18:36:18 +0000Subject: Re: Ten Things To Know About Autism - FAQ

-lol!! Will do honey!!I think we should book some days in the summer holidays to get our boys together - I'd love to have a look at some of what you are doing and see if you can get me back in a buzz. Also I have loads of resources you might want to borrow/copy that might save you spending out on stuff.Cant believe its TA next week already!! Looking forward to catch up time > > When you find the solution to cloning a body double and a shop that sells money trees can you let me now so i can do the same > > x > >

[Guest guest]

I couldn't agree more, at the time i was told about ABA it offered me a lifeline which i so welcomed and it was the same friend who introduced me to ABA who also introduced me to caudwells, which helped fund our ABA program for 2 yrs, which then led me to email lots of charities including Treating Autism, Charmen kindly emailed me back with a weblink to generation rescue, where i found the resue angel Nina Lteif who opened my eyes to the world of biomedical intervention, introduced me to this group and Mandi & Sue and the rest so they say is history or rather history in the making.....

So i guess i will always be grateful to ABA because in a round about way it bought me here.

x

To: Autism-Biomedical-Europe From: Moroza-@...Date: Wed, 8 Jun 2011 20:25:06 +0100Subject: Re: Ten Things To Know About Autism - FAQ

my post was a bit extreme, sorry. It's just my experience and I regret doing ABA and VB so much. I seriously believe that we would have a high functioning little boy by now if we had not done them. All that money and effort to make him worse! I know it must be ok for other kids because I know how intelligent the parents are and I see kids making progress! So I'll modify my comments to "I wish it wasn't the only programme recommended" and also just give a warning to anyone starting out that for some kids (like my Tom) it really is the wrong thing to do.Sara x

[Guest guest]

I shouldn't worry Sara, in our case there was only one way to go, remember so well when we first did GF/CF and everyone used to post about the dreadful withdrawal behaviours, in our case we would never have noticed the difference! The danger with any intervention is the amount of hope and emotional cost, it lasts far longer than the financial pain.

On the plus side us old timers approach everything with a very cynical eye and don't expect miracles with every new fad.

Vicky

Re: Ten Things To Know About Autism - FAQ

my post was a bit extreme, sorry. It's just my experience and I regret

doing ABA and VB so much. I seriously believe that we would have a high

functioning little boy by now if we had not done them. All that money

and effort to make him worse! I know it must be ok for other kids

because I know how intelligent the parents are and I see kids making

progress! So I'll modify my comments to "I wish it wasn't the only

programme recommended" and also just give a warning to anyone starting

out that for some kids (like my Tom) it really is the wrong thing to do.

Sara x