Recently diagnosed with autism - need advice on therapies etc.

[Homsa]

After a year of uncertainty, my DS (just turned 3) was finally diagnosed with autism last month. He will start at a nursery for autistic children at the local CDC in September, for 2.5 hours three mornings a week. They use the TEACCH programme there.
I was wondering what kind of help kids in other areas are getting, and if you're supplementing this with any therapies at home. And if so, how did you go about organising this and do you get any extra funding?

Hi Socci, thanks for your post! We're in South Yorkshire. I'll try to find some parents of other autistic children to see how much success they've had with the local authority here. Did you get funding for the full 40 hours? Was it difficult? Any tips on how to convince the decision makers? My HV suggested that it might be possible to redirect DS's nursery grant towards therapy - have you heard of anyone doing that?

Sorry, so many questions. I'm just trying to get my head around all this. I've got a little DD of 3 months, so the time I can spend with DS is very limited. He goes to a ms nursery at the moment where he's very happy, but not learning as much as he could do. I just feel that time is racing by and I need to do something NOW!

My son is almost 4, and was dx Autistic a year ago, we're in north east derbyshire, and the provisions OK, he gets weekly SALT, and in term time weekly TEACCH sesions with a SSPCSN teacher, he's in mainstream preschool full time, but did for 2 months attend CDC nursery, his place was cut by the LEA because his preschool sessions were increasing, he wasn't there long enough to settle so I can't offer any indicators as to how effective it was for him.

We're in the process of getting him statemented, with a hope of geting 26 hours support in school as of january.

Hi

I we are awaiting our CDC appt to investigate ASD for DT1 He has also been allocated a place at the SN nursery which should beging within the next month

Thanks everyone! Socci, that statutory assessment is for the statement of special educational needs, yes? I may well CAT you about the arguments to use, thanks.

I don't really know how 7.5 hours of SN nursery per week during term time compares - sounds like it may actually be more than what emmalou's DS is getting?

Quite depressing really. It's bad enough that it's taken us a year from being referred for an assessment to finally getting a diagnosis, but now that DS has been diagnosed, he should really get loads of help - from what I've read these pre-school years are really crucial, aren't they? There's no way we could fund 40 hours of ABA, though.

If you are interested in doing an ABA program then I recommend you join PEACh, you don't get all their info and newsletter until you actually join. We had funding for 40hrs ABA for 4 years when DS was age 2-6. It can be done and there are lots and lots of funded programs...... but also lots and lots of unfunded ones and lost tribunals. You really need to find other local families to find out the lie of the land and, of course, its always changing, even within Local Authorities! When you think of how much time an NT child spends "learning" then 40 hours a week could be viewed as low, never mind 26 hours or whatever especially when they are young and at their most receptive and having developed the least behaviours. But it all depends on reality, what you want and what you can get and what suits your child and your family. Good luck!

Thanks Davros, I've had a look at the Peach website. I've also managed to get in touch with a local mum (really local! lives just a few houses away) who's running a (privately funded) home-based programme for her son. They use the TEACCH approach though, she said that the Peach people weren't willing to consider anything under 40 hours per week. Apparently some of the staff at the SN nursery where DS will start in September also work as private therapists. So that might be an option, getting them to train us and a couple of students, who could then come in every afternoon to work 2-3 hours with DS. That would also ensure continuity between the stuff he does at nursery and what we work on at home.

The question is, how do 25-30 hours of TEACCH compare with a full ABA programme? Does anyone know about any studies that compare the two?

Also, how many hours of the training did you find you were able to do yourselves? I have to say, whenever I do manage to do 2 hours of uniterrupted "play" with DS, I'm totally drained afterwards. And he's not even that difficult to engage!

We did part time ABA for a while, whilst ds1 was in mainstream and not getting the help he needed. Also supplemented with private SALT (but make sure you get an ASD specialist if you go down that route). Now he's in a very good special school we don't really do anything.

Forget looking at PEACh as a service provider, that is where the 40 hours only thing comes in. Think of them as a charity that support parents and disseminates information and nothing more. Then think about finding someone to run an ABA program if that's what you want. In the early years most people are quite hooked on "evidence of effectiveness" and, as far as I know, TEACCH has no evidence of effectiveness in terms of improving IQ, skills etc but it is a workable and useful approach in general, especially in the classroom or as children get older and there is less to "teach" iyswim. ABA is proven as a teaching method rather than a "setting" and PECs is pure ABA. Not sure this helps....

Good summary from Davros.

Would agree entirely. My son needs to be taught new skills using ABA, but can practice skills on the classroom using TEACCH. PECS for him has been lifechanging.

Although we're not doing much now I'm going on a Growing Minds course in Sept to get ideas of how to occupy him. They look at ABA Floortime and Son Rise approaches. Without having to do the Son Rise halelujah bit

I would really really recommend PECS. It's kind of important not to muddle it with visual supports in your head, as these are more static and used for information. Both systems have been great for us as my ds is extremely visual.

PECS has for the first time enabled my son to grasp communication and get his needs/wants met appropriately. This has taken 3.5 years. It also makes him feel very successful across the day and gives him more confidence in using the (fairly limited) speech he has. My SALT told me not to bother with PECS training early on, but I did the basic course in June and it has transformed our lives. Although I'd developed my own system for getting ds to exchange before, it wasn't until I went to the course that I've been able to teach him to make spontaneoues requests (that are real functional communication). THe change has been wonderful to see and I'd really urge you to look at it for your ds Homsa. Pecs have a very good website and they always have courses running all over the place. PECS really only works if you're using it all the time and I'd say don't wait for the 'professionals' to implement it or you might waste time like I have.

Aside from this, my ds's time is split between mainstream Playgroup where he has 1:1 under Schools Action Plus, a specialist nursery at our local CDC and home where I've been running a Verbal Behaviour home programme since April. The latter always felt beyond my means previously (I am a single mum who lives on benefits) but I would say that people who are interested in this route should go for it if they possibly can. It is an effective way of teaching new skills and I've been able to work on the PECS intensively with increased human resources its given me. The only reason I can run this is because I work with my son >6hrs a week, as does my mum and sister and we've got 2 psychology students who also help out. We do around 30 hours. Also my LEA won't fund and so we have to fundraise and I'm using my savings (which I've been lucky enough to accrue since moving home), DLA and Carers Allowance (virtually everything) to pay for it. My brother is currently doing a sponsored cycle from Landsend to John O Groats to help me, bless him. We've really had to pull together as a family to do it. It has been great though and is worth looking into.

The Earlybird course was really useful especially for the ideas around developing interaction with your child and it's good to meet other parents locally. Contact the NAS to find out about your local person for this.

My son is also on a gluten and casein free diet. It has helped to overcome his gut probs (see GFCF thread below)

Add to this lots of time on swings, trampolines and in the swimming pool and - at the moment touch wood - I've found a good balance for me and ds who is a happy bouncy boy. Also for your own therapy I would recommend dipping into MN as IME parents are The very best source of information, support and understanding.

Good luck you sound very strong in looking at your options so soon after diagnosis. How are you coping with that emotionally?

Sorry to hijack the thread with this, but if anyone wants to sponsor my lil bro visit www.justgiving.com/helpingnye. He's riding at the moment in the sweltering heat

biomedical intervention is another option, one which we would be lost without. Since changing our boy's diet and supplementing with a DAN doctor's advice, our boy has seen so many changes in his life as have we. If you view autism as a medical condition, as we do, you will find the research and evidence backing up this view as most convincing.

Sorry to butt in but JimJams what is involved with the Growing Minds course and where can I find more info? Thanks.

Wow lots of new messages, thank you so much everyone!

Socci - thanks for pointing me to those studies. I've found this presentation by Gina Green which contains data from various studies and makes a strong case for ABA. DH saw it and immediately made up his mind that this is what we're going to do. I think I'll need to do a bit more reading before I'm conviced that this is where we're going to spend our entire savings (and also lots of money we haven't got...)

Davros - Will PEACH help you find a therapist once you've joined? Or how else do you go about finding one?

Springgreens, thanks for your long post! I've been doing my own amateurish version of PECS and Makaton with DS for the past year, while we were waiting to get him diagnosed and nobody would help us. It's been very very useful, and I look forward to being taught how to do PECS "properly" when DS starts at the SN nursery. (The staff there didn't seem to be so keen on Makaton, but I don't really understand why - I find it so much more natural than lugging lots of picture cards around?)

Have also talked to the EarlyBird people and it sounds really good, I especially like the videotaping idea... I'm always rushing around without reflecting properly on what I'm doing, so that would be really good to see.

Emotionally, I'm doing OK I think. The past year has been such an emotional rollercoaster, I've had an "is he - isn't he?" debate constantly playing in my head, my heart sinking every time he did something autistic, then feeling positive again when he showed signs of empathy etc. Now I can just say, he does x and y because he's autistic, and yes he's still in nappies and I have to put reins on him when we got out, but that's that, I don't feel bad about it anymore and I don't apologise for it.

Springgreens, is that your DS in the photo on that website? He is absolutly beautiful.

mamadadawahwah, have you got a link you can post about studies on biomedical interventions?

(I'm not sure if I've got the energy to try a GFCF diet right now - is it really going to be useful if your child has no allergies, gut problems etc. whatsoever?)

Homsa, ha ha that is what my DH did! He looked at "Autism" on the internet (this was 9 years ago!) and flatly decided that we would do an ABA program. He was right but I did need some persuading. PEACh won't directly help you find therapists/tutors but it is a good beginning to networking within the ABA community and they do keep info on people looking for ABA work, it just isn't their focus iyswim. What area of the country are you in? I can certainly help you with info and advice on setting up and running an ABA program although there are many other MNers who are much more up-to-date on it than me. I would strongly advise you to get the book "Behavioural Intervention for Young Children with Autism" by Luce, Green and Maurice (not too sure about those authors mind you), its avaialble from a company called Taskmaster in Leicester which you can Google.
I have to say that my take on the biomedical side is that it is very effective and important for SOME children with ASD but far from all of them. Think very carefully before you implement these interventions as they are are huge commitment and definitely DON'T start them at the same time as other interventions, one thing at a time.
Doing PECs properly and going on a course is very well worth it and Earlbird from what I've heard (didn't have it in my day, boo hoo).

There is often a negative attitude to biomedical intervention on mumsnet and i don't know why. Our boy has come on leaps and bounds not just from changing his diet but from understanding what is going on inside, where we cant see what is going on. The gf/cf diet wont kick in possibly for months. What you may see, however, is reduced behviours, better sleep, better stools/regularity. What you wont see is more important, and that may well possibly be a healed gut. Our boy, once he went on the diet and underwent various interventions for yeast issues and viral problems, lost his excema, started to grow his nails and hair back and stopped most of his "behaviours" and was finally able to learn from his ABA. he was so distracted from feeling awful that I don't believe he could learn. Because he cant talk, he wasnt able to tell us how bad he was feeling. In retrospect, however, looking at before and after pictures of him with black circles under his eyes, his hair pulled out from the roots, and his horrible excema, we very much made the right decision for our little guy and if he could talk would say thank you.

make an informed choice. Research research research and find out via tests what is inside your little one. You can get free NHS tests for leads, vitamins, amino acids, and more as well as liver, thyroid and kidney functions. Compare notes with other parents who are using biomedical interventions for their children and see if you can see any comparisons.

Our boy used to wake up laughing in the middle of the night (yeast issues), he wouldnt sleep, and most of all he was totally and utterly distracted by his environment. After 9 months of using ABA, he is finally beginning to sit down for five minutes to learn. His stimming is almost non existent now.

If your body is wracked with virus/bacteria/yeast or other baddies, it comes out in different ways. If you want information on biomedical intervention there is a very good web site in the UK called :www.treatingautism.com. They are also linked to yahoo forum where you can ask other parens what they are doing. There is a growing number of parents who are taking this road and the fact that DAN doctors and practitioners have all their patient lists full is a testimony to what parents already know, that autism is treatable and is in my view, a medical condition. Your local GP or Paed, of course, will disagree with this belief.

The sunderland test is far from foolproof and there is much to discredit it as proving anything. If you want to know what is going on with your child, do what we did and go to Immunosciences Lab and get the premier autism panel done, together with other tests. They will show whether your child has high measles/herpes titres, where his immunity is at, and whether he shows high receptors to casein and gluten.

Here are some more websites?

www.autismwebsite.com/ARI/dan/dan.htm

www.autism-aspergers.co.uk/ (this is especially good) based in the UK

www.autismmedia.org/

roll call of recovered kids:home.san.rr.com/autismnet/rollcall.html

oops forgot one. 25 hours of video of kids who have used methylcobalamin and some who have recovered and many who have made substantial gains or are near to recovery.

www.drneubrander.com/pageVid.html

methylcobalamin was a wonder vitamin for our little guy. He started echoing words 4 days after he used it!

I'm not negative about biomedical stuff, been using it for 4 years. However like Davros I think that it will help some children and not others. I also think that some of the biomedical intervention groups can be a little extreme, and I see parents on there chasing the ultimate "cure". Have to say I find some biomed sites a little evangelical.

If you want to look at biomedical stuff. I'd say start with the big things that commonly have an effect. Fish oils, cod liver oil (for vitmain A), gfcf and the Sunderland test - although they themselves will say it isn;t foolproof, from talking to friends it seems to be pretty accurate, salicylates, and epsom salts. If your child will take supplements (mine no longer will) then zinc, B vits, Mg all worth looking at. Also enzymes worth a look at. Also worth looking at yeast issues- we found saccromyces to be helpful in getting his gut back onto an even keel when he would take supplements. If he would take them again I would give saccromyces, fish oils and a general autism designed multi vit/mineral.

I definitely think biomedical stuff is worth a look at but I think it is quite easy to end up in a situation (I've seen it happen) where are child is taking about 15 supplements a day, only eating chips and you've completely lost track of what's working and what isn't.

Our approach is not "cure" (it's not going to happen to a 7 year old non-verbal kid), but to ensure his food isn't making him miserable. It's easy for us in a way as food problems translate to huge amounts of headbanging, and I think it is worth the hassle of avoiding gluten and peanuts (2 big culprits for him) to have a bruise free head.

If you do go down the biomed route I think its useful to have someone guiding you. I found nutilink to be good. They take a very gentle approach, they limit the number of supplements they give (because they understand the difficulties in getting the children to take them), and they test in a sensible order (so they give saccromyces before running one test because they know that it's likely to improve using saccromyces, so saves some cash!)