Applied Behaviour Analysis- could you please briefly answer the questions below?

[Ronifromwales]

Hi all, my ds who is nearly 5 will be starting ABA in February and I am trying to recruit volunteers from his school to come on board. I will need to really sell this to the Headmistress and SEN coordinator and I thought of doing a quick survey and having from you, the parents and consultants or anyone with experience in this area, some feedback on the improvements your child has had with their programme. My son is currently receiving SALT via the SRB in his school and we are trying to recruit a volunteer to work with him in the school or after school for at least a couple of sessions a week.

School doesn't have to get involved at this point as we are doing it all privately and after school if they don't allow him to leave earlier.

They know that he will do it anyway and they have been willing to listen and seem very interested about the programme so, as part of my pitch, I will add your reviews on how well it has worked for your child, with or without school participation. Please bear in mind that any criticism of LEA or school system will count against me so I would be grateful if you could just reply to my questions.

If it hasn't worked for some reason, please also state that but I'd be grateful if you could refrain from mentioning any problems related to school support.

I am interested in your honest opinions about the treatment itself, if you know what I mean.

P.S. I am more interested in experiences from parents whose children are on the part-time ABA programme.

I would be grateful if you could either copy the question numbers in your answers or the whole set of answers and I will then create a survey sheet that I will post here soon for other parents.

The questions are as below:

1- How long has your child been doing ABA?

2- How many hours per week at the start?

3- How many hours per week towards the end (or now if they are still on it)?

4- How is your child's programme set up? (please let me know if it is after school or at home during school hours).

5- How has the programme impacted in your family life?

6- If the sessions are during school, is the therapist a volunteer from school or from outside?

7- How old was your child at the start of the programme?

8- Did your child have a diagnosis at the start of the programme?

9- Please describe briefly your child's difficulties before they started on the programme (with or without a diagnosis).

10- Please describe briefly what difficulties you have had as a parent (e.g. hours, consistency, finding volunteers, etc) throughout the programme.

11- Please describe briefly how soon after the treatment started you started to notice improvements and where your child is at now.

12- Would you reccommend ABA?

If anyone could help me with that, you would really make my weekend.

Love to all

Roni
xxx

Sorry I meant above that it will be fine if you either reply with question numbers or copy the whole set of questions into the 'add a message' window.

:c)

1- How long has your child been doing ABA?
2 years 2 months

2- How many hours per week at the start?
15 (parents did all 15 hours with ABA supervisor overseeing)

3- How many hours per week towards the end (or now if they are still on it)?
35 as now funded by LA (after Tribunal). 1/3 in school and 2/3 out of school

4- How is your child's programme set up? (please let me know if it is after school or at home during school hours).
4 mornings 1:1 at home / ABA office
5 afternoons in school
5 evenings at home

5- How has the programme impacted in your family life?
Fantastically. DS is learning quickly and is much happier. we are much more positive about his future. We don't have the same fear or frustration with poor progress we had before. We have much better insight into his difficulties - for eg we now know that things he couldn't learn before were down to poor teaching not down to a lack of ability. It does require sacrifices as he has to be ferried between placements, but for us this is a price worth paying until he can access fulltime school. So we work less, have petrol costs etc. On the plus side he has ABA in holidays which takes alot of pressure off us as a family and keeps him in a routine. His behaviour at home is much better as we get trained how to deal with it and he is getting consistent approaches at home and school. ABA will work on issues we have at home eg stripping off clothes, haircuts, toileting etc so we can input into programme easily.

6- If the sessions are during school, is the therapist a volunteer from school or from outside?
The therapist works for the ABA provider and is trained by them. So not a school employee

7- How old was your child at the start of the programme?
nearly 3 (4 by time went fulltime)

8- Did your child have a diagnosis at the start of the programme?
Yes

9- Please describe briefly your child's difficulties before they started on the programme (with or without a diagnosis).
Severe regression. Lost almost all functional speech. No social interest in others. No joint attention. Behaviour problems. Intolerant of other children. No playskills. Obsession with numbers and alphabet. Very passive.

10- Please describe briefly what difficulties you have had as a parent (e.g. hours, consistency, finding volunteers, etc) throughout the programme.
Initially we did the tutoring ourselves which worked well for 6 months but we got burnt out. Stress of fighting to get it properly funded / going to tribunal. Not being able to do / afford enough hours for first year until won funding. Did try and employ indep tutors at times which was not successful (we live in small town) as couldn't find people easily. Since won FT programme really happy with everything - can't bear to think what our life would be like without it. Keeping the provision as long as DS needs it will mean more stress and more battles ahead.

11- Please describe briefly how soon after the treatment started you started to notice improvements and where your child is at now.
Improvement within 1 week. Started using words functionally again and learnt basic imitation skills. DS still has mod-severe autism, struggles to learn language but now lots of phrases and good basic understanding. More social but still far from typical. Happier, more affectionate. More interested in world. Plays alongside other children. Needs support to interact with other children as only initiates very occasionally. Needs everything taught systematically so without ABA would not be learning nearly as much. Behaviour much easier to manage. More compliant. Little trouble at school with his ABA support - able to join in whole nativity play for eg. Better attention. Better motor skills. Couldn't be in mainstream without ABA but with it he functions well. Still needs most new skills taught 1:1 and then use school to generalise / practice them. Expect him to keep making progress. Feel very positive about his future if he keeps ABA. Plan is for him to gain skills eg group learning skills to be able to transition into mainstream in future.

12- Would you reccommend ABA?
Absolutely. It is a million times better than anything our local mainstream or special school could offer. Staff have a fantastic understanding of how to get children with autism to learn. Feel with ABA he will achieve his potential, whatever that turns out to be.

Have PM'd you my answers.

1- How long has your child been doing ABA?
14 months

2- How many hours per week at the start?
Between 15-21 hours per week, at some points down to 12 hours, at some points 24 hours.

3- How many hours per week towards the end (or now if they are still on it)?
18

4- How is your child's programme set up? (please let me know if it is after school or at home during school hours).
For the first year was a mixture of home sessions (12 hours) and shadowing at nursery (12 hours).

Since Sep this year, and starting school, all ABA is at (mainstream) school as school shadows - 3 days a week.

5- How has the programme impacted in your family life?
It has meant a small amount of restriction in my (and dd's) freedom - the days when he's had sessions meant not going out on day trips etc.
That is the only negative effect.
The impact has been all completely positive. It has transformed our lives - life no longer revolves around ds and his rigid behaviour, fear of 'upsetting' him, us being unable/scared to try something new in case he couldn't/wouldn't do it. Life is no longer a daily battle with countless meltdowns. We are all immeasurably happier.

6- If the sessions are during school, is the therapist a volunteer from school or from outside?
The school shadows are our own tutors who we pay (if only they were volunteers!!).

7- How old was your child at the start of the programme?
3.5

8- Did your child have a diagnosis at the start of the programme?
No, but got one a month later.

9- Please describe briefly your child's difficulties before they started on the programme (with or without a diagnosis).
Verbal but was mainly limited to functional speech - no conversation. Stereotypical & repetitive play (eg pouring sand or soil), no imaginative play whatosever. No real interest in other children. Limited interaction with adults esp. unfamiliar ones. Big control issues - had to control his whole environment. Behavioural difficulties (tantrums, aggression). Very rigid thinking, need for routine (to control his environment). Obsessive.

10- Please describe briefly what difficulties you have had as a parent (e.g. hours, consistency, finding volunteers, etc) throughout the programme.
Only real difficulty has been finding good, reliable tutors. Have realised the good ones are like gold dust - lots of dud/unreliable ones out there, and often their rate does not reflect their ability.

11- Please describe briefly how soon after the treatment started you started to notice improvements and where your child is at now.
Noticed improvements within a couple of weeks. Made huge leaps within first six months. Continuing to make steadily good progress - to the extent that he no longer needs anything like an intensive intervention (reducing programme to a couple of sessions a week with sporadic school supervision).
He is chatty, happy, genuinely communicative, has brilliant imaginative play, has made real friendships, interacts really well with adults and children. Obsessions have been massively reduced.
Still needs fine-tuning with social communication/language, attention, still a bit obsessive, and needs a bit of help emotional regulation, but after 3 aba consultant observations, 2 EP assessments, and SALT assessment, all in agreement that school shadowing can fade out.

12- Would you reccommend ABA?
With no hesitation whatsoever.

AgnesDiPesto and bialystockandbloom thank you so very much for your answers. This is just what I am looking for! I've had a private reply as well and when I've gathered 10 + replies I will present findings to school and post it here too. It is a very useful and valuable survey for us parents who are thinking about starting the therapy and haven't got much info on ABA.

Brilliant Thread Roni,

And thank you for contributing Bialy & Agnes ... We are just about to start the program with our 2.5y old and it is really good to hear positive stuff.

Agnes: His behaviour at home is much better as we get trained how to deal with it

Have to say this, for us, has been the best thing about doing ABA - we now know what to do, how to a) manage and enjoy daily life, and b) teach him. Win-win.

Whatever support they might get at school, there is very little, if any, practical support for home life provided by the 'state'. No-one comes into your home to even help you deal with daily tantrums, aggression, repetitive behaviour, self-injury, stimming, obsessive behaviour, toilet training, or any other of the numerous things that make daily life so hard. Let alone get anywhere near actually helping teach skills such as functional communication, or how to interact.

ABA has become our modus operandi for parenting.

roni I have a document which gives an overview of ABA (Verbal Behaviour approach, that's what we do), and explains how it would work within a school/nursery which we used for ds's school. Happy to email it to you if you pm me your email address.

1- How long has your child been doing ABA?
2 & a quarter years.

2- How many hours per week at the start?
6 to start with, increasing to a maximum of 21 but average 12-15 a week.

3- How many hours per week towards the end (or now if they are still on it)?
3-6 a week.

4- How is your child's programme set up? (please let me know if it is after school or at home during school hours).

Initially home based with the supervisor advising & training nursery 1:1 but no formal in-nursery programme. For the past year it has all been in the community - museums,library, soft play, parks, shopping, restaurants, clubs, cinema, swimming etc.

5- How has the programme impacted in your family life?

When you have a good tutor & things are going well it is absolutely the greatest thing ever - you see your child learning constantly; you can finally communicate with them, parent them, do 'normal' things. There is something good out of every session & every day/week/month the skills get ticked of the list & that's a fabulous feeling. When there are tutor problems it is awful ... time & money for nothing.

ABA is simple really & when you adopt it as a way of parenting (I do it with all my children automatically now) life is just much easier.

6- If the sessions are during school, is the therapist a volunteer from school or from outside?
n/a

7- How old was your child at the start of the programme?
2.8

8- Did your child have a diagnosis at the start of the programme?
nope

9- Please describe briefly your child's difficulties before they started on the programme (with or without a diagnosis).

severe speech delay, severe receptive language delay, massive compliance issues, phobias, anxiety, no self care skills, toileting problems, food issues, in his own world to the extent that he ignored everything & everyone unless the interaction was entirely on his terms, no play skills (unless you count throwing toys), demand avoidant to the point that PDA was seriously considered.

10- Please describe briefly what difficulties you have had as a parent (e.g. hours, consistency, finding volunteers, etc) throughout the programme.

Unreliable tutors, bad tutors (confusing instructional control with authority, finding the child irritating, not having the physical fitness required, exaggerating experience), hopeless tutors who just couldn't get it, tutor who got upset by tantrums, tutors who just weren't adaptable ... particularly when working with verbal HF child.

We have one excellent tutor now which is why we do so few hours - at this point the skills he needs are help with advanced language issues & social skills ... any old tutor won't do when you get to that level & I honestly believe that quality is far more important than quantity.

Cost is obviously a huge concern.

11- Please describe briefly how soon after the treatment started you started to notice improvements and where your child is at now.

It wasn't overnight with us - we had a very long pairing period & a long time to get instructional control (inexperienced tutors -getting in someone with masses of experience makes a huge difference) it was a good three months before ds really trusted the tutors, but in the six months after that he made several years worth of developmental gains. He is now a just a delight in every way & he finds delight in most things too :)

Early gains were compliance related, reduction in anxiety, motor imitation & reception instructions - then the words & sentences came :) Our programme has always been play based & NET (again more difficult for inexperienced tutors).

12- Would you recommend ABA?

Undoubtedly BUT do not underestimate the frustration & misery caused by less than ideal tutors - don't be tempted to settle because there is limited availability. I HE ds & do all his academics with ABA techniques (I'm pretty much the only person he'll do DTT type stuff with ;) ) ... it becomes just a part of your life after a while.

I don't like the cure claims particularly, nor having being indistinguishable as a goal - ds' paed agrees that he would not get an ASD diagnosis if he presented now BUT he still has issues - language is still delayed, big toileting problems, dyspraxia (which has become more apparent with age), restricted diet primarily.

Yes when you get a diagnosis at 2 or 3 and your child has no skills at all - can't play, can't talk, can't learn - nobody helps. They talk about support and respite and the SALT will talk about modelling but no one will actually has any ideas how to teach them anything. Then you start ABA & there's hope again because you see that they can learn.

Great idea Roni.
For myself I saw more progress with 3 months of behavioural input than I had with over 2 years of 'highly specialist' s/lt input.
Most standard state input is utterly ineffectual.
Well meaning but pointless.

1- How long has your child been doing ABA?

9 months, then a year break, then 4 months

2- How many hours per week at the start?

15-20 hours

3- How many hours per week towards the end (or now if they are still on it)?

15-20 hours

4- How is your child's programme set up? (please let me know if it is after school or at home during school hours).

For the first 5 months it was the parents with an experienced tutor with a Masters degree in ABA. We then got another tutor on board. Our 'Consultant' is a qualified teacher.

5- How has the programme impacted in your family life?

It has made it possible to HAVE a life. It is a bit annoying having to keep your house tidy with resources available but the good tutors become part of the family, and are able to be flexible if you suddenly fancy a trip out. The targets of the programme always include life skills and as you see your child more and more able you start to have hope and plan fun things for the future that can be practised in advance to ensure success.

And you learn parenting skills that WORK. Have been on approximately 8 parenting courses but ABA is only about YOUR child and so gives you the skills to manage and feel capable of getting closer and closer to a normal life.

We lost a tribunal and had no ABA for a year. In that time our child made no progress on independent SALT and EP assessments and his behaviour and stimming deteriorated. He regressed in his toileting and his violence. When we started again, this was sorted within a week.

6- If the sessions are during school, is the therapist a volunteer from school or from outside?

Paid for by us. Had to find an independent placement for it to be possible as state schools tend to be a little more restricted in what they are prepared to allow and there is so much ignorance around ABA that we found the schools to be nervous.

We are looking for a mainstream school at the moment and the current headteacher is begging us to get the Headteachers to ring her as she is so enthusiastic about what we have achieved together. It is really very important that the setting are on board and that they understand that they run the show, the ABA is the supplement and the differentiation, NOT the curriculum.

7- How old was your child at the start of the programme?

3rd birthday

8- Did your child have a diagnosis at the start of the programme?

Yes, only just.

9- Please describe briefly your child's difficulties before they started on the programme (with or without a diagnosis).

Moderate-severe autism. No functional speech. Repetitive/obsessive behaviours. No engagement. We were losing him.

10- Please describe briefly what difficulties you have had as a parent (e.g. hours, consistency, finding volunteers, etc) throughout the programme.

ABA is currently unregulated in this country. It can be hard to find tutors and consultants that are as qualified and experienced as they say they are. It can be hard to find people who understand enough about child development as well as ABA, or know how to adapt and apply ABA to natural environments and to grab opportunities to learn as they present. Having said that, I have never yet met a mainstream school LSA that can do this either.

Bad ABA does exist, and because it is so effective, bad ABA is really bad.

11- Please describe briefly how soon after the treatment started you started to notice improvements and where your child is at now.

About a fortnight. He went from the 2nd percentile to the 92nd in 9 months for verbal comprehension and in all the other areas of development he progressed at 3/4 times the rate of his peers.

12- Would you reccommend ABA?

I would recommend the methodology. I wouldn't recommend it blindly as you need to be careful who you get to deliver it. This is symptom of the UK and how behind we are in evidence-based practise. It means cowboys can make a mint from bad practice.

But, good ABA, is absolutely incredible and if you have that you should do everything in your power to keep hold of it for your child.

Hi all thank you all so much for your responses. I am overwhelmed that you have taken your precious time to reply and will email each one of you privalety and offer the results of the survey via email when I compile answers in a spreadsheet via. Let's keep this thread active so that we have as many replies as we can get until next week. It has been useful to hear about the difficulties too, I am more prepared for what lies ahead. This is very, very interesting stuff.