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DS just diagnosed with ASD, what to do next?

34 replies

firsttimer08 · 08/01/2010 16:21

ok, i had posted a couple of weeks earlier and as my anxiety did not reduce and we managed to get an appointment with daphne keen too - we have now got a 'label' for ds (nearly 15 months now). he has a 'working' diagnosis of asd (as there were some positives in his favour) and while only time will tell as all the posters here have suggested to me earlier (on how he fares), we want to get some early intervention started.

She mentioned getting specialist salt help, try hanen and then working on his play routines (so he can go through the whole pretend play and learn to play with his toys etc).I asked about ABA-VB and she seemed to think it was more suited towards improving behavioural issues.

Areas of concern/ things we would like the therapy to help ds with are:

  • no/little receptive language,
  • no words,
  • does not share much attention,
  • little interest in toys except for putting things in and out of the box and throwing things down the stairs (which we quite enjoy as it is good exercise going up and down collecting things ).
  • He is fairly warm at the moment, but i feel (maybe paranoia) that he is getting a little distance. Like few days when i've come home from work, he's been excited to see me and then walked off.

I'd like to get some input from experienced mnnetters on potential therapies we could explore. I had already got in touch with floortime and they looked v. interesting, but more I read it seems there is less evidence backing it up than ABA. But I am surprised as to why the paed did not think ABA-VB would be the way to go given the positive experience of many on this forum too.

Also i came across postings by asdx2 - i cannot contact you, but would be grateful for your reply. You mentioned you started ABA with your 17month old dd and had quite successful results. What areas do you think the aba worked on and what aba did you use?

finally, i work full time is it really possible to run an ABA-VB program whilst full-time at work. Can I find tutors to also come around on saturdays, so I can work on sundays myself? I ask because I am about to change jobs for a better paying one. If I do take up that job, I would be able to afford private treatment and therapies, but i'll have to work full-time and then a new place would be less flexible/cognizant of my problems. At my current job, i could easily move to working only 4 days a week, though that would mean even less money for the therapies.

Thank you all in advance for your help.

OP posts:
lisad123wantsherquoteinDM · 08/01/2010 16:36

where in Uk are you? I know here we have a specialist preschool unit for children with asd, not sure what other areas have,

firsttimer08 · 08/01/2010 16:51

we are in london....

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Marne · 08/01/2010 16:54

Hi, my dd2 has ASD and goes to a specialist nursery where she has SALT and music therapy. At the age of 2.3 she was introduced to PECS (Picture exchange communication system) as well as signing. Dd2 is now verbal (still a little behind with speech) and now play with her toys instead of just lining them up. She now goes to main stream nursery as well as sn and will be starting ms school in september.

I gave up work to do therapy at home with dd2, i couldn't have done this without claiming carers and DLA. Since giving up work dd2 has improved so much (its made being skint worth while).

We were lucky that dd2 could get therapy at her nursery so we didn't have to go private. The only therapy she doesn't get is OT (we have been refused it twice).

Dd2 has got the most out of music therapy, she now gets 1:1 music therapy with a student and it has helped give her confidence to talk, Dd2 sang before she talked.

lisad123wantsherquoteinDM · 08/01/2010 16:59

well im in herts, so i guess it depends on how far you are willing to travel and also what side of london you are, but the one near me is called TRACKS.
Might be worth seeing whats in your area. I think you would be better to find a preschool/nursery/some place that can help rather than loads of different indivuals, as they are likely to come with different ideas of how to do things and it can be very confusing.
Or even a nanny with a specialim in ASD
Have you looked at BIBIC?

firsttimer08 · 08/01/2010 21:31

thanks. Unfortunately, hertfordshire would be very far for us even if we can move. Hmm nanny with asd sounds good, though i'm sure those would be far and few between, but should certainly look around.

thank you for the link to bibic, I was not aware of it.

oh yes the paed also mentioned pecs.

DS is not at all swayed by music, would that impact the benefits of music therapy? I have found one place that does music therapy which would not be too far.

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grumpyoldeeyore · 09/01/2010 01:32

We started ABA at 2.10 (DS did not regress until over 2 and dx at 2.6). I can't answer your questions about how it would work with a much younger child, but would disagree it is just behavioural. DS had a lot of language which he stopped using and his language was the first thing to come back greatly assisted by ABA. PECS is ABA based approach. When his language improved he also became more social, which I wasn't expecting. He showed more interest in staff at nursery and interacted with them more. His behaviour has not really changed with ABA - he was passive and easy going before and still is - we work on behaviour during ABA ie because he has to sit, listen, pay attention etc which he does not like; but he does not have any behavioural issues (aggression, problems with transition, meltdowns) etc but ABA has still been really good for language, social skills, attention, play skills - we work on all of these. I would think you would have to talk to actual ABA providers about how it would work with a young toddler, because it would be quite different to what we are doing. Some have waiting lists. (Most things with autism have a waiting list). Also go and watch a session.

It might be worth contacting Treehouse (ABA school in North London) they take children from age 3 but also have charity / info / advice etc

Also if looking at PECS look at Pyramid website. If you don't want to sit on a waiting list you can go on a PECS course yourself or even take your child to Brighton and they will teach PECS to you / child intensively. Our local speech therapy team refused to teach PECS to a friends child until he was 2.5 because they said (wrongly) he would not be able to do it before then, but I know Pyramid staff have worked with much younger children.

I would not be able to do ABA and work full-time. Our provider insists we are present in the house when tutors come. So you might have to get a tutor to go to a childminder / nursery etc. However what you would miss out is seeing the tutor work with your child and learning those skills. Really the parent has to know how to deliver the programme so you can use it outside tutor time eg when at shops etc using the same skills to promote language etc. Some tutors will do weekends, but supervision etc tends to be during the week, but could be evenings. Ideally both parents would need to be at supervision sessions. It is a big commitment.

We do most therapy hours ourselves eg we are the main tutors so we chose to work less and do more ABA ourselves; otherwise I would be working but paying someone else to do ABA. But would have to pay twice - once to pay a childminder / nursery and once to pay ABA so I wouldn't be better off and I wouldn't be learning how to be more effective with DS.

Sometimes you can get volunteers eg in London you might be able to get psychology students to be tutors as volunteers and some people use family members / friends. There are ways of cutting costs.

What I would also say is that my son does not tolerate long sessions at nursery. He goes 3 mornings and that is enough for him. His behaviour tends to deteriorate and he gets overloaded. This time last year I was working part-time, looking to work more / earn more etc and then DS regressed. I have to say financially it has been disastrous. We get DLA and Carers allowance but it does not make up for a career. I have turned down 3 really good jobs in the past month because I would not commit to the necessary hours they wanted me for. Even when DS is in school, I won't be able to work fulltime as he could not cope with before / after school clubs etc and nor would they necessarily have the skills to cope with him. I have resigned myself to not having a career again for the foreseeable future. i do some freelance work but DS is really a fulltime job. Not just the actual therapy but all the stuff that goes with it - handover at nursery can take 20 minutes not 2; we have reams of paperwork re appointments; paperwork about his education needs and a battle with our local authority over his provision. That probably sounds really depressing but its the reality of life this past year. I spent several hours on Boxing Day working on replies to the local authority proposed statement. We have earnt far less and paid out far more this year (autism is an expensive business). The other thing I would say is that its hard on you, the worry and anxiety and coming to terms with it and I have been relieved actually that my work demands were manageable. I think starting a new onerous job whilst having this over you would be a tough one. My parents help us out, they feel useless being far away so give us a little bit of money each month towards his ABA. So talk to those around you they might want to help.

My sister is in USA and her son had speech delay (not ASD) and they both worked full-time and so organised play therapy and speech therapy through the nursery. Her son did improve but his problems were mild compared to DS and I think he would have improved more quickly if his parents had been more involved in the therapy and knew what they should be pushing at home, as delegating it entirely to others in my opinion really reduced the effectiveness. You could video some sessions and watch them back etc, but it wouldn't be the same as being there, I find the supervision essential. Also its a chance for us to say "DS has started doing this this week" and then they can build on that or address it and you have that direct dialogue with the specialist. I think the research shows parental involvement is a key factor.

I would recommend "A work in Progress" by Ron Leaf to read as it explains what an ABA curriculum includes and you will see its far more than just dealing with behavioural problems.

Another thing to consider is specialist nurseries or you might find a spec ed teacher who is looking for part-time work eg if they have their own children. I know one childminder who used to work in a SN school.

But I would agree, when they improve, being skint is worthwhile.

StarlightMcKenzie · 09/01/2010 12:25

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firsttimer08 · 10/01/2010 20:28

thanks you guys ! you are starts. I really appreciate all the details especially grumpyold. Its taken a day to take it all in, i.e. about how the program would work, the hours etc. I am quite sure at the moment that I do definitely want to work. We have been doing some ad-hoc floortime with ds this weekend (20 minutes every hour or so) based on the website and it sure is exhausting. It would be good to get in some professionals if we are to start aba and then mix it up with floortime.

How often do the supervisions take place? Is it fortnightly or every week? We are planning to call CEIC (i think duncan fennemore is associated with them and i've seen his name quite often on this website) and find out from them too what it would entail. Also how often do consultants visit?

Have already signed the contract with the new place, but at the moment it looks like i would have to break it and then cut down number of days I work (or make work from home type of arrangements) with my current employers. The money would definitely be a BIG issue, though my parents and brother who who also live on another continent, have offered to help out or else we will just have to give up our house deposit (sigh, after years of saving). Also mother-in-law can get involved with the tutoring or at least overseeing things whilst we are at work which is great.

i came across treehouse too, though as i understand it is extremely difficult to get a spot. I wonder how they operate their waitlists or entry procedures. we may have to move closer to muswell hill if we do ever have a chance of getting there.

How does PECS interact with ABA? Is PECS one element of ABA or mutually exclusive?

Finally, I guess I can say goodbye now to ds being bilingual right? He already understands few things in my mother tongue... but I am not sure whether to continue now or not. When I spoke to mindbuilders (floortime consultant), she was of the view that I should continue with my mother tongue as that is more natural. But I forgot to mention to her that dh mainly speaks english.

Even if I continue working, I was thinking that I could come home early and at least oversee the sessions on 2 days, so we could implement them on a sunday ourselves.

One question, given how intensive some of these programme our, do you really get time to take dc's to other places, like swimming, baby groups etc etc?

OP posts:
firsttimer08 · 10/01/2010 20:28

typo: starts=STARS !

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grumpyoldeeyore · 10/01/2010 21:13

PECS was started by a SALT and an ABA therapist. It has similar basis to ABA. However if you are going to do ABA then they would advise you about PECS and if needed or not / when to introduce. They will probably try and encourage verbal language first with ABA and then if that does not work consider use of PECS as part of ABA programme. Definitely rope in help and work if you can, especially when they are young, it gets harder when they are school age to sort childcare I find. We have no family locally so are stuck with situation for now - but hopefully will get to tribunal some time this year to see if can get Local authority to take over paying for ABA.

I used to take DS to groups etc but when he regressed he disliked going and his behaviour got worse so don't now really. But we have a social circle through our other children so to an extent DS has to fit in with them and their social lives. Also he goes to nursery so gets social stuff there. He still naps in day so I find it hard to fit things in between school runs, ABA and naps. But theres no reason why you can't go to these things as well as do ABA.

There are rules about parental leave - all parents can take (unpaid) parental leave. When I was last employed it was up to 5 but older for disabled children - but I think its even more generous now. You probably wouldn't want to raise it when you are starting a new job but worth knowing the rules if you did need to change / take some time off in future.

StarlightMcKenzie · 11/01/2010 04:42

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firsttimer08 · 11/01/2010 15:08

Glad you pointed out that it is possible that the ABA may not work and PECS may alos need to be used.

Certainly, even with NT it seems after school care is harder, than it is for smaller children.

Does your ds go to mainstream nursery and are they usually ok with having special needs children? We are thinking of pulling ds out of nursery now and putting him into at-home childcare with nanny or else childminder (if we can find one close enough) for two reasons: (i) i thought nursery may not be so amenable to giving 1:1 attention and (ii) so that he can get consistent care. At the nursery he always seems lost to me.

Oh yes parental leave is quite generous. Up to 12-13 weeks or so up till the child is 5 years and slightly more if the child is 'disabled' (according to our company documents) - though not sure what this term means and includes.

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firsttimer08 · 11/01/2010 15:12

Starlight thanks I am a very obsessive person (maybe ds gets it from me!). You are right I am looking forward to the solution, so I do not get depressed over the dx.

Before ds was born, we had already started to research schools he would go to (primary and secondary), the mandarin language classes we would send him to at age 3 and chess groups. That is the extent of my obsession...and now we have a dx which would mean many of those things will not be possible........

Ok fewer questions then in the future!!

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sickofsocalledexperts · 11/01/2010 19:34

Dr Keen is right that ABA sorts out behavioural issues , but she is not right that it does not also aim very much at developing speech - particularly Verbal Behaviour, or VB. VB, as the name suggests, sees speech as a behaviour like any other, w which can be encouraged and developed by the right motivation. So many people in this country don't really know what ABA is about, and only have some vague inherited theories. It has been the making of my autistic DS. It is expensive though, and time-consuming at first to recruit the tutors. But given that all gets done, it should be possible to work too as the tutors look after the kid as well as teach him (though lunch hour may need to be covered). I would recommend it highly, and I have tried many of the other things you will get offered (TEACCH, PECs, OT, homeopathy, SALT, nobbly cushions etc etc) and found them not as effective as VB. Good luck! I too started out with a diagnosis from Dr Keen, though mine sounds like it was more definite than yours.

sickofsocalledexperts · 11/01/2010 19:42

And I am also in London if you want to chat -or email offline? I do recall though that an experienced ABA headteacher (at Rainbow school) told me - do not try to get the child to be bilingual, but concentrate only on developing one language. She was quite firm on that point, as it's too much for a kid with speech delay to learn 2. You sound very much like me when I got my Dr Keen diagnosis - a whirl of action, I was just the same. But I really do recommend you go for VB, and don't get sidetracked by some of the other bollocks like I did! IMHO, you will need the better paid job, as doing VB intensively is v expensive. Then you need to find the right supervisor, the right tutors, and get the non-learning hours covered. My tutors have never required me to be in the house, in fact rather the opposite, as I just get in the way. You might though
need to take some days off to learn the techniques, as I effectively do ABA with my child as a normal way of being now, all the time. Let me know if you want to chat/email.

firsttimer08 · 11/01/2010 21:19

thanks sickofsocalledexperts, i'm ready to put all my eggs in one basket (where the basket=aba). I just hope it works in our case too. One of the posters suggest that sometimes pure VB may not work and PECS may need to be introduced as part of ABA. That is how I would imagine it too, that I can oversee occasionally and also take days off so I can learn from the tutors/supervisors etc.

I spent part of today calling up some listed on peach's website, but they all go to the answering machine. I wonder if everyone is still snowed in !

Would love to chat/email and find out about aba providers too. How do I contact you?

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ArthurPewty · 11/01/2010 22:41

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grumpyoldeeyore · 11/01/2010 22:50

Hi yes he goes to a mainstream private day nursery which has quite small class sizes, but i share your concerns about its suitability. Its slightly complicated in our case as DS was typical until he was 2 and then lost skills / speech / socialisation etc. But he was already in the nursery environment and used to it and professionals were telling us to leave him there as it was one big transition already mastered if you like (not sure if there was any evidence for this advice but there you go at the time it seemed reasonable). Also I needed to do some work to keep afloat financially. However my view is what they have done there is a poor relation to what we do at home via ABA so he goes the minimum of hours and we have just regarded it as babysitting. He does not play with the other children but does interact with the staff who have known him since he was 1 and are totally devoted to him. They have had very little training and support in ASD from our local authority specialist teachers though. He is now 3 so gets dedicated 1:1 person funded by local authority (12.5 hours per week) but we are also paying for this person to get some ABA training so they can be more effective. I have had big reservations about leaving him there, although I know he is well cared for I am not sure if he gets much out of it. But there have been some plus points: 1. we have been seen to have "tried" the local authority standard provision and can explain to a tribunal why it is lacking and ABA much better; 2. it has been a good monitor of his condition eg it was signs of withdrawal at nursery that first raised alarms and then as he came out of regression / started ABA we saw changes in that he became more engaged again. 3. He has mostly had 1:1 there even before it was officially funded as the nursery are generous with staff & class sizes are small. 4. Now we have 1:1 the nursery are happy for us to use ABA in nursery so that will mean the quality will improve and he can generalise his skills / use the other children for social skills therapy etc.

But with a younger child I agree theres not much point. I am not even sure my NT children got much out of nursery before the age of 3. However what you will find is that all the official provision wants to go through nursery, because autism intervention is classed as education they try and squeeze pre schoolers into an education model where speech therapy etc are all provided via a "setting". My Local Authority even told me (wrongly) they were not responsible for him until he was 3 and that I should just wait for 6 months until he was 3 before doing any intervention! We are always asking why does everything (specialist teachers, speech therapy etc) have to go via nursery even though he is there so few hours, but never get a decent explanation. They have a model for age 5+ and are being forced via earlier diagnosis & closure of specialist nurseries to apply this for younger children without really giving any thought as to whether it is appropriate - also I suspect many of these professionals prefer to deal with teaching staff rather than "pushy" parents who ask them lots of difficult questions rather than just being grateful.

However, all DS's progress has come from private ABA and zero from NHS & Local Authority provision, so if I was going to do it again and had the money I would probably have pulled him out and have started ABA sooner. I truly did not expect the publicly funded provision to be as poor as it has been. If I could afford it I would not bother dealing with the NHS or Local Authority at all. However as we are trying to get ABA funded by Local Authority via tribunal we have to be seen to be not refusing help offered. Which isn't that onerous as they don't show up and offer any very often!

nappyaddict · 12/01/2010 02:12

firsttimer08 Do they do a MDA in your area? Where we live children go to a nursery at the hospital for 4 weeks where they are seen by lots of different people and all the reports are written up and finally a diagnosis is given if needed. There was a little boy when my friend's DD was there who was 17 months (also started ABA and PECS at 17 months) and had a diagnosis by 23 months. At age 2 he had the development of 6 to 12 months and now at just turned 3 has the development of child of 3-3.6 with no behavioural problems at all.

jabberwocky · 12/01/2010 02:56

Firstimer, have you looked into Floortime therapy? That is something that you could be trained in to do at home even if you are still working as a supplement to other therapies iykwim. Also, have you looked into diet changes such as glutein/casein free?

firsttimer08 · 12/01/2010 14:08

Wow grumpyold there is just soo much information to understand/read re LEA funding and how to play them strategically. We are still at a very early stage in the process I guess - but hopefully i'll get guidance from all of you when the time comes. DS already goes to nursery (twice a week) but we are considering pulling him out of it. He is generally very lost there and hardly engages much with other children. He has picked up a few good eating habits from there I must say, but that is probably all.

We are lucky to have got some indicative or "working" diagnosis at least. We will still need to go to the NHS paedatrician at 18 months for a full diagnosis. Also Daphne Keen indicated that they may also do chromosome testing (is that typical?).

jabberywocky What is MDA? We have not considered diet changes, as so far ds has not shown any issues with food or his digestive system. He is quite good with eating a range of foods (including mildly spicy curries). I thought diet changes should only be made if there are other signs/symptoms is that correct?

We have looked at floortime and will be getting training so we can start that up to supplement any ABA approach we use. Have you tried it? What was your feeling about it?

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ArthurPewty · 12/01/2010 14:27

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StarlightMcKenzie · 12/01/2010 14:37

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sickofsocalledexperts · 12/01/2010 16:46

firsttimer, I will try and CAT you if you are set up for that on mumsnet?

sickofsocalledexperts · 12/01/2010 16:51

firstimer, I can't contact you via the Contact a Mumsnetter thing, would you mind registering so we can chat?