ND people / parents of children with SEN: “PECS is ABA and therefore abusive” - ?

[SinkGirl]

This was said in a Facebook group today - a support group for hyperlexia - and it has left me feeling really distraught all day. Anyone who tried to discuss it was called an abuser and muted.

There were two reasons given:

1. withholding items until a card is given is cruel and abusive

2. It’s cruel because you can’t have a proper conversation with it due to limited vocabulary, and we wouldn’t want to have our words limited in this way

Both of my twins use PECS, although one has just moved to an AAC device as he now grasps the concept enough to be introduced to a wider vocabulary.

We have never ever withheld items from them just because they haven’t given us a card. We just use it so that they can tell us what they want - they can lead me to the kitchen but I have no way of knowing what they want from in there. I can go in and hold up every thing they might want, but this leads to frustration and distress for them. PECS reduces that frustration. If they tell me what they want some other way (eg bringing me an empty cup or bowl) I have no need to use PECS and don’t.

In terms of vocabulary, I don’t really see it as any different from a younger child having limited vocabulary. A child just learning to speak and with limited understanding of words isn’t going to be having a conversation about their favourite colour and why they like it (one of the examples given).

I would never want to do anything to harm my boys. But they are completely non verbal and their distress at being unable to communicate is heart breaking. DT2 has been so distressed all day and I have no idea why. He doesn’t have the skills yet to use an AAC but he will sometimes use PECS - is it really abusive to encourage the thing that helps him?

I’ve been really struggling lately anyway but this has just made me feel sick. Maybe I’m doing it all wrong when I’m just trying to help.

Some of the views I’ve encountered have been extreme (eg. Any therapy is abusive as they don’t have to learn the things parents want them to learn - but of course I want them to learn to be able to communicate basic needs and wants at least, however they are able to do that).

Would love others views on this and I don’t want to be dismissive of those who share this view - I’m just trying to understand a) how what we’ve been doing could be considered abusive and b) what I could / should do differently.

Pecs is a fantastic thing because it opens up communication for those who struggle orally.

IMO it falls into similar to makaton and sign language in that it’s a form of communication for those who struggle with traditional methods

I'm so sorry you've ended up feeling this bad. What was said was nonsense. I used to use PECS with DD.

In respect of (1), withholding something from a child with SEND, despite knowing what they want as they have communicated that much, until they use the adult's chosen form of communication is abusive, and is an ABA technique. But that's not about PECS! That could be "until you use your words" or "until you show me the right card" or "until you make eye contact" or whatever else it is that the adult wants.

It sounds as though you are in tune with your twins' communication to you and facilitating that, whether through PECS or AAC or sign or speech, is not abusive.

In respect of (2), I would shoot straight back at them with "this is outright ableism. Who are you to decide what is a "proper" conversation. This is right up there with colonialists who thought that languages with fewer words were inferior." Let them take the pips out of that, the sanctimonious little dickheads.

Sorry, that might have been overboard, but I think Facebook groups are often toxic with most aggressive voices are from people who enjoy being obnoxious to struggling parents.

There is SO much anti-ABA stuff around at the moment! PECS is based on some ABA principles. PECS gives individuals skills so that they can be independent, speak for themselves, make choices and so forth. If PECS users didn't have items withheld momentarily and didn't have to communicate their want for it then they wouldn't learn the principles of communication and requesting.

You can't go into a shop and drag the assistant to the thing you want and point - that might work with your Mum at home but it won't work in the wider world. Learning how to request is KEY to future independence which is I imagine what you want for your twins?

Do you have contact with PECS UK? Perhaps you should speak to them?

Also totally agree with @KarmaViolet those groups are dreadful, won't and don't encourage any debate it is their view or nothing.

Do yourself a favour and don't give them headspace.

I’ve been following this debate for ages. Keep going with what works for your boys. It’s fantastic one of your boys can now communicate things to you that he couldn’t before. I think you could make the argument that taking away pecs from him would be abusive! As for withholding it would be cruel to completely withhold something but is it any different to when a NT toddler wants something and their parent encourages them to say the word instead of instantly handing it over. You know your boys best and if your son can communicate with you using pecs and he is happier for it then don’t listen to those who feel anything and everything is ablest

I agree with everyone else.
what was said in the group is ridiculous.

PECS is a tried and tested method to encourage those who have not naturally grasped early communication, that they are able to control a little of what they receive.

I think this group is one it might be worth leaving. I've seen PECS work as the starting step to understanding communication in many children.

Thank you all. It’s such a difficult line because I absolutely don’t want to force them to do things for the sake of doing it (eg eye contact - I don’t care), but on the other I feel like I’m doing them a disservice if I don’t do everything I can to help them learn to communicate in some way as best they can.

I think maybe it’s another one of things that shows up the giant gulf between autistic individuals - someone saying they think PECS is abusive because it doesn’t allow a nuanced and complex discussion clearly isn’t thinking about what life is like for a person who can at most understand single words and can’t say any.

I joined that group because it’s about hyperlexia which one of my twins shows signs of - although honestly this sort of thing is coming up in more and more groups lately I’ve noticed. Sometimes it’s definitely warranted, at other times I’m not so sure.

PECS can be an incredible support for so many.

These groups are so difficult because a minority of the people posting on them are struggling so deeply with something and it often results in pushing their own damaged views on others.

You do what works for you.

We use similar to PECS (it's actually homemade cards with photos - foods, clothing, footwear, people, places etc) and it gives my non verbal toddler a choice, the only way that he can have one currently.

The PECS/ ABA debate is academically interesting & I do think there is something to it but the fact that it then gets used as a stick to beat parents (nearly always mother's) with is awful. We are all just doing the best we can for our kids and should really be kinder with each other.
I have been looking into Aided Language Input , sometimes called Aided Language Stimulation with my son and find it's helping us so far. Very much early days though.

What you are describing with your son isn't strictly speaking PECS

Very formal, to the letter PECS where you initially exchange the picture for the desired outcome and then develop to travelling to the communication partner to make a request etc etc is based on ABA and is being used less and less in schools in favour of total communication environments which include pictures to support communication, makaton etc

I did the 2 day training and decided it wasn't something I wanted to use in my own practice but I do use elements of it

What you are doing is not abusive and your children are clearly being supported well (AAC is a fantastic tool)

Lots of these support groups are now being taken over and parents and educators are being told they are abusing children -I had quite a discussion about attention autism buckets the other day....

I've now left most of the groups

Ah yes, I’ve seen a Attention Autism discussions too - that they definitely do use at school.

Obviously we did initially have to teach them to hand over the card in exchange for what they wanted so they got the idea - but I never withheld anything if they didn’t do it. Probably took longer the way we did it, as I would take any cue as an indication they wanted something. So yes I guess more total communication.

I’m sure they would strongly disapprove of hand over hand too - but my twins absolutely love hand over hand and we never force them to do something, they just want the support as their fine motor skills are still delayed.

@MistyFrequencies

The PECS/ ABA debate is academically interesting & I do think there is something to it but the fact that it then gets used as a stick to beat parents (nearly always mother's) with is awful. We are all just doing the best we can for our kids and should really be kinder with each other. I have been looking into Aided Language Input , sometimes called Aided Language Stimulation with my son and find it's helping us so far. Very much early days though.

Thank you - I’ll look into this!

Please ignore them. My dd was non verbal at 3 and started aba and used pecs (not U.K.) by 4 she started to gain language. She from 6 could enter mainstream school when we moved to the U.K.. I can't be sure obviously but I think early aba from 2 made the difference

I've seen PECS give many children a functional means of communicating their needs, reduce their frustration and support the development of spoken language.

I've also seen it do none of those things for other children.

It sounds like the way you're using it is working well for your boys. You are not withholding items, you are being respectful of their many forms of communication. Keep doing what's working for you as a family.

Thank you.

I think DT1 is going to have more options - he can already spell a lot and is reading some things, but I also think he’s less likely to speak than DT2, as he still has only one or two sounds. Now he has the AAC he can hopefully learn to communicate more that way.

DT2 make a lot more sounds and sometimes attempts words I think, but he’s much less interested in PECS because he’s not motivated by much (except food) so we don’t push him. Hopefully his interests will grow as he gets older.

It’s so difficult, I only want them to be as happy and independent as they can manage - their lives are likely to be very different to the people who say things like this I think. But also I don’t want to dismiss their experiences.

I did 3 day pecs training ages ago.
It's about teaching children that communication is an exchange. You give something - initially a card, ultimately maybe a sentence strip, maybe words - to get something.

The initial stages are not witholding items. It is hand over hand. Eg chocolate buttons in a dish, person helps hand over hand to show the child they can get a chocolate button by handing over a card. Then later they begin to discriminate cards and make a choice - eg crisps or chocolate buttons - not hand over a card or get nothing.

I have seen pecs in use many many times and what it so often does is reduce frustration. Non verbal children develop a "voice", a way to express their preferences, make requests etc. Most children actively like using it once they get the idea and will walk around with their "book". I have seen non- verbal kids able to say "Miss Smith can I have small blue ball" on a sentence strip, and obviously more recently use a communication device. I see it as empowering.
It's very different from some iterations of ABA where children are ignored until they produce the "correct" response.

I know I'm late to the party (by a couple of years....) but thankyou for this. This thread came to me at just the right time.

I have just been social media lynched for mentioning my son uses a PECS system. They even went to the extent of saying that saying the words "Good job" or "well done" was a form of ABA and that I was abusive to my child for even saying these things.

They made me doubt myself, I cried ugly tears, I was angry.... to be made to question my parenting ability.

They told me all forms of external praise is ABA and destroys the internal gratification a child gets from learning. That all reward charts, systems and words of encouragement was abusive.

Reading your post was literally like De-javu as if I had written it myself.

The replies here have just restored my faith and are really what I NEEDED right now xx