Here some suggested organisations that offer expert advice on SN.

Unbiased info about ABA please - where to find it?

(24 Posts)
WellTidy Mon 01-Jun-15 15:52:47

My just turned 3yo DS2 almost certainly has ASD. We're awaiting formal assessment and diagnosis, but that's my firm view. He also has no recognisable language at all, no words (not even mama) despite having had private SaLT for nine months.

We need to do something different. We are taking him to a dietician (that's another thead of mine) to see if he has allergies or intolerances (he is a very very picky eater) and are trying to help him that way too.

I am considering ABA, basically because portage (which is group sessions in my area) and private SaLT and the very little NHS SaLT support that he gets, simply aren't really making much difference. I am so concerned for him.

We are considering (private) ABA therapy. I know that its an unregulated business in the UK, so I don't know what information to accept. Any steers to balanced information would be hugely appreciated.

sickofsocalledexperts Mon 01-Jun-15 16:12:43

Research Autism is seen as an impartial site , has even been rated an NHS approved site. They give ABA a pretty good write-up: there are caveats, eg more research needed, but you will find the same caveats on virtually all interventions they cover. Some forms of early ABA get their high 2 tick ranking; though so does Teacch and some medications, plus CBT if he is more cognitively able. Diet doesn't get a good ranking.

PolterGoose Mon 01-Jun-15 16:26:55

The Cochrane Review is worth exploring for meta analysis of existing research.

sickofsocalledexperts Mon 01-Jun-15 17:21:01

Yes Cochrane Collaboration is definitely a very reputable source, seen globally as highly impartial and a 'gold standard' of research. I extracted all the summaries they have written about interventions for autism, if anyone is interested, and really ABA comes out pretty much best - albeit it is a guarded recommendation (but if you read them all, you'll see that a guarded recommendation is about as good as it gets). You'll notice they haven't reviewed OT or SALT, despite those being the most common NHS offerings for autism, though Research Autism is honest enough to admit on its site that there's zero evidence for either with autism, but 'people seem to like them'.

Cochrane - autism reviews

Authors' Conclusions - 2010

Music therapy may help children with ASD to improve their skills in important areas such as social interaction and communication. Music therapy may also contribute to increasing social adaptation skills in children with ASD and to promoting the quality of parent-child relationships. Some of the included studies featured interventions that correspond well with treatment in clinical practice. More research with adequate design and using larger numbers of patients is needed. It is important to specifically examine how long the effects of music therapy last. The application of music therapy requires specialised academic and clinical training. This is important when applying the results of this review to practice.

AUTHORS' CONCLUSIONS - 2010: There is no evidence of effect of SSRIs [Prozac] in children and emerging evidence of harm. There is limited evidence of the effectiveness of SSRIs in adults from small studies in which risk of bias is unclear.

Authors' conclusions - 2013
The review finds some evidence for the effectiveness of parent-mediated interventions, most particularly in proximal indicators within parent-child interaction, but also in more distal indicators of child language comprehension and reduction in autism severity. Evidence of whether such interventions may reduce parent stress is inconclusive. The review reinforces the need for attention to be given to early intervention service models that enable parents to contribute skilfully to the treatment of their child with autism. However, practitioners supporting parent-mediated intervention require to monitor levels of parent stress. The ability to draw conclusions from studies would be improved by researchers adopting a common set of outcome measures as the quality of the current evidence is low.

AUTHORS' CONCLUSIONS - 2012

There is some evidence that EIBI is an effective behavioral treatment for some children with ASD. However, the current state of the evidence is limited because of the reliance on data from non-randomized studies (CCTs) due to the lack of RCTs. Additional studies using RCT research designs are needed to make stronger conclusions about the effects of EIBI for children with ASD.

Early Intensive Behavioral Intervention (EIBI) for kids with Autism
A specific form of behavioral intervention, referred to as Early Intensive Behavioral Intervention (EIBI), is a highly structured teaching approach for young children with ASD. A recent Cochrane Review suggests that EIBI is an effective treatment for children with ASD. The evidence points to gains in the areas of IQ, adaptive behavior, socialization, communication, and daily living skills; with the largest gains made in IQ and the smallest in socialization.

AUTHORS' CONCLUSIONS - 2008: Research has shown of high rates of use of complementary and alternative therapies (CAM) for children with autism including gluten and/or casein exclusion diets. Current evidence for efficacy of these diets is poor. Large scale, good quality randomised controlled trials are needed.

Authors' conclusions - 2012
There is some evidence that social skills groups can improve social competence for some children and adolescents with ASD. More research is needed to draw more robust conclusions.

Authors' conclusions - 2014

While there is some evidence that Theory of Mind (ToM), or a precursor skill, can be taught to people with ASD, there is little evidence of maintenance of that skill, generalisation to other settings, or developmental effects on related skills. Furthermore, inconsistency in findings and measurement means that evidence has been graded of 'very low' or 'low' quality and we cannot be confident that suggestions of positive effects will be sustained as high-quality evidence accumulates. Further longitudinal designs and larger samples are needed to help elucidate both the efficacy of ToM-linked interventions and the explanatory value of the ToM model itself. It is possible that the continuing refinement of the ToM model will lead to better interventions which have a greater impact on development than those investigated to date.

Authors' conclusions - 2007

Due to the small number of studies, the methodological quality of studies, and small sample sizes, no recommendation can be advanced regarding the use of B6-Mg as a treatment for autism.

Authors' conclusions - 2007

Risperidone can be beneficial in some features of autism. However there are limited data available from studies with small sample sizes. In addition, there lacks a single standardised outcome measure allowing adequate comparison of studies, and long-term followup is also lacking. Further research is necessary to determine the efficacy pf risperidone in clinical practice.

Authors' conclusions - 2011

There is no evidence that auditory integration therapy or other sound therapies are effective as treatments for autism spectrum disorders. As synthesis of existing data has been limited by the disparate outcome measures used between studies, there is not sufficient evidence to prove that this treatment is not effective. However, of the seven studies including 182 participants that have been reported to date, only two (with an author in common), involving a total of 35 participants, report statistically significant improvements in the auditory intergration therapy group and for only two outcome measures (Aberrant Behaviour Checklist and Fisher's Auditory Problems Checklist). As such, there is no evidence to support the use of auditory integration therapy at this time.

Authors' conclusions - 2011

Current evidence does not support the use of acupuncture for treatment of ASD. There is no conclusive evidence that acupuncture is effective for treatment of ASD in children and no RCTs have been carried out with adults. Further high quality trials of larger size and longer follow-up are needed.

Authors' conclusions - 2011

To date there is no high quality evidence that omega-3 fatty acids supplementation is effective for improving core and associated symptoms of ASD. Given the paucity of rigorous studies in this area, there is a need for large well-conducted randomised controlled trials that examine both high and low functioning individuals with ASD, and that have longer follow-up periods.

Authors' conclusions - 2012

There is no evidence that single or multiple dose intravenous secretin is effective and as such currently it should not be recommended or administered as a treatment for ASD. Further experimental assessment of secretin's effectiveness for ASD can only be justified if there is new high-quality and replicated scientific evidence that either finds that secretin has a role in neurotransmission in a way that could benefit all children with ASD or identifies important subgroups of children with ASD who could benefit from secretin because of a proven link between the action of secretin and the known cause of their ASD, or the type of problems they are experiencing.

Authors' conclusions - 2012
Evidence from two randomized controlled trials suggests that aripiprazole can be effective in treating some behavioral aspects of ASD in children. After treatment with aripiprazole, children showed less irritability, hyperactivity, and stereotypies (repetitive, purposeless actions). Notable side effects must be considered, however, such as weight gain, sedation, drooling, and tremor. Longer studies of aripiprazole in individuals with ASD would be useful to gain information on long-term safety and efficacy.

Authors' conclusions - 2012
Clinicians considering the use of TCAs [Tricyclic anti depressants] need to be aware of the limited and conflicting evidence of effect and the side effect profile when discussing this treatment option with people who have ASD and their carers. Further research is required before TCAs can be recommended for treatment of individuals with ASD.

www.cochrane.org/search/site/Autism

zzzzz Mon 01-Jun-15 19:30:39

Does he have any sounds? can he copy (not just verbal, but physical)?

My son had words at 3 but not names. He is severely Language disordered and probably has Autism (we are waiting dx).

Can he understand what you say?

Can he point?

mjmooseface Mon 01-Jun-15 20:11:27

Thanks sickofsocalledexperts for your comment, that was really helpful smile

AgnesDiPesto Tue 02-Jun-15 00:49:54

National Standards Project in USA is recent review of all the research for interventions.

WellTidy Tue 02-Jun-15 08:59:06

These links and the information are just what Iw as looking for, thanks. I am becoming more and more convinced that we should start a home based ABA program. Its a big decision for us, as it would mean me leaving my job so that I could be at home, co-ordinating the program and learning with him. I am struggling with this, as I have built up a 15 uear career, worked in the same firm all of my professional life, and would be giving up a dream job with dream hours (3 days a week).

Deep breaths.

zzzzz yes, he points at what eh wants and he points at things eg in books to get me to say the word. his eye contact and sight checking is really good. he has sounds, but they're limited eg the consonants g, b, d and l and a long 'eeeeeee'. He is frustrated and can be aggressive at times. He can understand some of what we say, but his understanding is generally poor, I'd say. He doesn't copy. It is difficult to penetrate his little world. But he loves cuddles, loves being read to and knows his numbers.

zzzzz Tue 02-Jun-15 12:04:07

He is frustrated and can be aggressive at times.

This is absolutely standard and rational for young children with communication difficulties. It gets better and is to be expected. CThere is lots that can be done to help him communicate and to help him find ways of showing distress in easier and less upsetting ways.

Mine did not say names till 3yrs 3months and no Mama till nearly 4. The key communicators were music (he could hum tunes for different things) and numbers/colours. He is friendly and cuddly (and now 10 and talking, though not age appropriately.) He's lovely and we are happy.

I think ABA seems to be particularly effective for pointing/copying (I didn't do it but that's what I've heard). I taught ds to copy with a drum. one of us banged a rhythm and the other hand-over-hand helped him copy. we said "copy". Then with jumping rhythms. Then notes. Then sounds.

What would you have done for the days you work if he didn't have these issues?

WellTidy Tue 02-Jun-15 12:11:45

I have a 7yo (NT) DS and 3yo DS2. Since having DS1, I have worked 3 days a week. That's what I went back to after having DS2. We've always had a live out nanny for the 3 days a week that I work. I just don't think it it feasible for our nanny (who would eb looking to leave within a couple of years anyway to have her own DC) to co-ordinate an ABA programme amd observe that on her working days, and for me to 'take over' on my non working days.

I have done tapping rhythms on his legs and tummy. I do it along to music, and I do it to tap out syllables of words. Its great that you've had so much success with it.

He doesn't really respond to music much. He dances a bit, but he doesn't seem to be very interested.

I feel that we need professional help, as nothing seems to be mmaking that much difference at the moment.

I

zzzzz Tue 02-Jun-15 12:45:54

Have you tried music therapy (I know you say he doesn't do music but it is more about sound). Ds responded really well to that.
My ds has a really severe language disorder (ie bottom 0.1 %) so it might be different. Iykwim. His ass is was less obvious them

WellTidy Tue 02-Jun-15 13:06:31

zzzzz Thanks - I've never considered music therapy, but I've just had a look here at the British Association for Music Therapy and I think it could be worth a go. Did you take your DS to a group, or did you do sessions privately (at home?)? My DS seems to have a really severe language disorder too (he is 3.1 with no words - I put a bit more in jmy post at 8:59), and I'm desperate to help him.

zzzzz Tue 02-Jun-15 13:22:36

His ASD was less obvious...sorry phone

bialystockandbloom Tue 02-Jun-15 14:05:38

It is possible to run an ABA programme without you giving up work, especially if you're part-time. Eg tutors could work to cover 6/7 hours a day. Then your existing nanny covers the time after the tutors leave and before you get back from work.

And if he starts nursery and you have an ABA programme running, the tutors accompany him there so the programme just continues. (Btw this is often an important part of an ABA programme, as opportunities to interact with peers and practice skills with peers is essential.)

That's what we did when we did ABA pre-school.

As you have two days not working, you could use those days to observe as much as you can, and to hold team meetings, arrange anything that needs to be done etc.

A programme doesn't have to be full-time 5 days a week either - we did a maximum of 21 hours per week, most of the time was 18 hours a week. It still made a startling difference. You could do something like concentrate the tutoring hours around the days that you're there too, so you can benefit as much as possible from observing and learning yourself.

It probably would be a good idea take a couple of weeks off work when the programme starts to sit in as much as possible, though.

The best results doing ABA had for my ds were in the areas of interaction with peers, communication, and play skills. We started when he was 3.6, and before he had a diagnosis too smile

zzzzz Tue 02-Jun-15 14:39:02

We had a session of music therapy as part of his multi disciplined assessment (Nhs) and then a couple of sessions from that therapist. We then had private salt and private music therapy 1:1 at home.
In mind the music therapy was about relaxation and interaction. There were no words at all but conversations were had with instruments. He LOVED it. I think it made him hungry for interaction. Salt did less for his language but more for my understanding of him (and a voice of authority at school to say "he needs this" accommodation).

I will try and read back. But I'm on my phone -- and am in the middle of painting a skirting board multitask tastic!--

WellTidy Tue 02-Jun-15 15:07:02

That's interesting bi. I didn't appreciate that it could be as flexible as that. If BA helped my DS in the same way as it helped yours, I'd be dlighted. Its his communication that I think needs the most help. Any reliable means of communication would make such a difference.

Out of the blue, a colleague has recomemnded an ABA therapist to me, and I am hoping to speak to her later. I feel that we've taken a positive step by considering this and finding out more. DH is fully on board, and is even looking at ABA schools, and considering whetehr we could afford to move out of borough so that DS could attend there, and how he woudl still get to work. Somehow, I don't think its going to be as straightforward as all that ...

zzzzz We've never been offered a multi discipled assessment. I wonder why - maybe DS is too young for this to happen yet? Or maybe its because I didn't know that I should be asking for one sad. I will pursue it with the paed that he is seeing next week.

WellTidy Tue 02-Jun-15 15:07:38

Sorry for all the typos. I pressed Post too soon.

zzzzz Tue 02-Jun-15 15:15:58

Typically at 3.5 Here.

Language for thinking will be too advanced. I think the pre-school version is Language for learning??? Can't remember Amazon books and you should find it.

I would hang on to your job if at all possible. Would they consider a leave of absence? Ask it can't hurt.

bialystockandbloom Tue 02-Jun-15 17:03:33

I would expect the assessment you're waiting for will be a multi-disciplinary one - i.e. with developmental paed and SLT. When we went through the process our first appt was with a community paediatrician, who agreed there was cause for further assessment so referred to the next stage, which was the multi-displinary one, where we got the diagnosis. This was a good few years ago though, and in London - not sure where you are, or whether it still works like this, but it should be something similar for you.

AgnesDiPesto Tue 02-Jun-15 20:42:30

At just 3 you could absolutely carry on working 3 days and do ABA.

We only did 15-20 hours a week at that age and that was still enough to see lots of progress. We kept DS in nursery 3 half days and DH and I both did reduced hours / worked at home etc. We couldn't afford tutors so one of us did 3-4 hours a day ABA (DS would usually nap afternoons at 3!)

When we won funding and could use tutors we just had to attend monthly team meetings (but could sit in on other sessions when we wanted). Our provider has its own tutors so apart from attending team meetings and supervision sessions there wasn't any co-ordinating for us to do

It wasn't an easy option to keep working but was worth it to keep all the plates spinning and we needed £ to pay for expert reports / a legal advocate to win at tribunal so its worth keeping a good wage if you can.

You can take unpaid periods of parental leave which would be preferable to giving up.

You can also video sessions etc if you can't both be around

Once we got funding (which took over a year and 2 appeals) ABA staff were allowed to go into nursery

You also find you change the way you parent once you have learnt some ABA techniques so even when not in therapy sessions you are making a difference.

As long as you arrange for supervision etc to fall on the days you don't work it should be ok

bialystockandbloom Tue 02-Jun-15 21:01:00

You also find you change the way you parent once you have learnt some ABA techniques so even when not in therapy sessions you are making a difference

Yes, that too, definitely. It was a fantastic and unexpected side-effect of embarking on ABA actually, as it was something which we could all do to become better parents to ds, to help him develop constantly, but also be able to enjoy just being a parent too as you know how to behave with your child. So different from any 'therapy' sessions provided by someone else (e.g. SLT) which, while they may be worthwhile in themselves, are a separate, discrete form of teaching which will end when the session ends, but don't give you any form of help with how to be with your child, how to help him, but also how to manage being with him for the remaining 100 hours of the week.

WellTidy Wed 03-Jun-15 08:52:54

Wow - so good to know that it might be possible to keep working 3 days a week (they are long days, though 10 hours each at least) and still do ABA. I don't want to give up work (not for financial reasons - we are very fortunate that DH earns a high salary) as I get a lot out of it socially and it is an excellent job and is the kind of job that is in very high demand. I wouldn't get a job like it again if I walked away.

I'm feeling more and more sure that ABA is the way for us to go, and soon.

Thank you all for your input.

bialystockandbloom Wed 03-Jun-15 11:53:29

I'd hang on to your job too in your position, sounds great. ABA can be a flexible as you like, you can choose how many hours to do it.

WellTidy Wed 03-Jun-15 12:03:55

This is really enlightening bia. I am feeling so much better. Don't get me wrong - I want to do ABA to thee xtent that it is needed to have the most likelihood of helping my DS. That is the priority, and it seems silly to do it but only in a half-hearted way. But if there is a way of doing it, and me still working, that would be my ideal.

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