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We really need help - what to do about increasing autistic behaviour

(21 Posts)
guyshahar Fri 17-Jun-11 15:03:47

I have posted before - our son is 22 months old, and autistic/unusual behaviour is getting stronger each day. Withdrawal, not making eye-contact, not responding to his name or other attempts to get his attention, getting very stressed at the slightest thing when tired and screaming uncontrollably in stress and frustration for ages, and other things.

We feel like we are losing our little boy more and more every day, and really want to do something to help him NOW. But we have no idea what.

What experience does anyone have about anything that we can do for him starting immediately, that might help him?

The best we got from the doctor after a long and hard fight was a referral in a few weeks or months to mental health services and to a community paediatrician. She really didn't seem to accept that this was urgent.

We are seeing a cranio-sacral osteopath at the Osteopathic Centre for Children on Tuesday. Don't know if that will help - it seems to be effective for some. We really want to do more than this. What other things can we do???

StarChartEsq Fri 17-Jun-11 15:08:36

Read Catherine Maurice's book 'Let me hear your voice'.

Sorry you're going through this.

Chundle Fri 17-Jun-11 15:13:22

Hi guy, glad you got your referral. Nows the time to make a big long list of all your concerns to take with you when you see the paed.
In the meantime have you looked into getting an ABA tutor? Lots of people on here have found them fantastic, I've not used one myself but they are apparently very good, I'm sure someone will be along soon to give you more advice on this. Also try ringing the National Autistic Society and see what they recommend.
Very best of luck x

Chundle Fri 17-Jun-11 15:14:45

Also what about Bibic if you can afford it

RockinSockBunnies Fri 17-Jun-11 16:17:51

Definitely recommend the Catherine Maurice book - it's brilliant. Also, the earlier the intervention, in general, the better the results. I'd go for as much ABA as you can possibly get.

cansu Fri 17-Jun-11 16:21:00

I would recommend ABA. It has helped dd2 massively. We did 15 - 18 hours per week for about 2 years before she started school.

asdx2 Fri 17-Jun-11 16:21:42

Another thumbs up for Catherine Maurice here too. Dd regressed at 12 months so started intervention really early (before 17 months) and it saved her IMO.

guyshahar Fri 17-Jun-11 16:41:09

Done some research on ABA - sounds effective, but costs £45k per year without a diagnosis (which we don't expect for ages and ages) which is more than double our income.

Even an option using trainees who may volunteer to try and get get some experience is out of our ability to pay for it with all of the consultancy fees and so on - and the person on the phone also understood the concern that a trainee might make a mistake....

Any other thoughts?

dietstartstmoz Fri 17-Jun-11 16:50:33

Read the 'Let Me Hear Your Voice' Book and also go on amazon and buy 'The Verbal Behaviour Approach', as this is a DIY approach to doing an ABA style program at home tackling the areas you want to work on. We have this book and are just going through it before we start some tactics at home. Have you contacted your local specialist early years service-parents can self refer, see if there's any portage in your area. Or SEN dept for the local authority, ask for a referral to speech therapy if you haven't aleady had one. Speak to your health visitor, phone some family childrens centres to see if there is an ASD support group you can go to. Contact the National autistic society and find parent support groups in your area. Have you thought about looking into applying for DLA?
It's hard isn't it. Our DS2 was diagnosed with ASD in March and he's now 3.10 and i'm finding it incredibly hard.

StarChartEsq Fri 17-Jun-11 17:00:18

The money is a worry but lots of parents do ABA themselves. Spend on getting an experience tutor and learn all you can then take over.

lisad123 Fri 17-Jun-11 17:17:02

where are you? there are a few specialist Autism preschools which take children from 2years. Our dd2 was referred at 2 and it was recommend to us. They are mainly private but well worth it.
Also floor time is meant to be great, here

Certainly at dd2 special school they spend time just copying what the kids do, seems to help build conections with them.

sickofsocalledexperts Fri 17-Jun-11 17:26:08

ABA is the only intervention that has any real research to back it up. In the original Lovaas research study, of children between the ages of 2 and 5 who did intensive ABA, nearly half were judged to be "mainstream candidates" by the age of 5. Those are pretty amazing stats. I too would go for as much ABA as you possibly can. If money a problem, read on my mumsnet blog two articles I have posted which are full of tips on what you can do yourself to develop the brain and change behaviours. Up until the age of 5, the brain is "plastic" or malleable, and you can actually shape its development with this stuff. Good luck.

EllenJaneisnotmyname Fri 17-Jun-11 18:36:01

I'd also recommend "More than Words" which is Hanen book for young children with ASD, for helping with their communication and interaction. I found it the most useful book when my DS was young, my 'Bible.' Get it from Winslow online which is the cheapest source, cheaper than Amazon etc. Link here

guyshahar Fri 17-Jun-11 18:47:14

Hi - I am in Feltham (South West London). Do you know any such schools near here?

EllenJaneisnotmyname Fri 17-Jun-11 18:53:04

Actually, just checked Amazon and their price for More Than Words has come down, cheaper than Winslow. Sorry!

growingstrawberries Fri 17-Jun-11 18:56:57

Floortime is excellent - really helped us lots in the early stages (without knowing it, we were doing a lot of floortime play anyway - was the natural way we played, which was a bonus). Well worth getting the books from the library and having a read. Every so often ICDL have online conferences too, which can be worth doing. iirc, there are some useful videos etc on the website too.

ABA is great too. It needn't cost anywhere near £45k. we have never spent that annually, in over 5 years of doing ABA. We started out hiring a student for a few hours a week, and as others have said - we paid out for supervision/consultant, used books, did it ourselves etc.

LeninGrad Fri 17-Jun-11 19:01:44

Message withdrawn at poster's request.

Eloise73 Fri 17-Jun-11 19:45:11

I'd recommend these two books which set out practical things you can do at home, very parent focused. The first one is 'Overcoming Autism' by Lynne Koegel which is based on Pivotal Response Therapy (which is evidence based and a naturalistic intervention model derived from the principles of ABA) and the other is 'Raindrops on Roman' by Elizabeth Scott.

Also this book by the same author, Elizabeth Scott which is titled 'Autism Recovery - Manual of Skills and Drills' (here's a link: http://www.amazon.co.uk/gp/product/1934759384/ref=oss_product)

We didn't have a huge budget and so wanted to make the best use of the small resources we have. Our dd is doing really really well and i'd be happy to chat with you if you PM me. We have been working with a home intervention specialist who has been an affordable option for us who has trained us in helping our dd and helps keep us on track and move forward.

You can also contact universities which have speech and language therapy departments and ask if any of the students want to do some volunteer work. We got 3 volunteers this way.

We did pay for a few months of sensory integration therapy with an occupational therapist when our dd was around 20 months old and they helped enormously.

The more you can do early on the better. There is heaps you can do without having to spend a lot. And keep pushing for a diagnosis.

Good luck!

lisad123 Fri 17-Jun-11 19:48:48

Yes "more than words" was very helpful fir us too.
The only two specialist schools I know are, TRACKS (autism) in Herts and Puzzle in Berkshire. Not how far that would be from you my geography sucks!

Agnesdipesto Fri 17-Jun-11 20:36:09

We spent a lot less than this. We did initial aba workshop of 3 days which was expensive then £400 month to hire an aba supervisor and did 15-20 hours ourselves. It was very hard but we showed enough progress to win funding at tribunal. Our programme was far from perfect and he did not make as much progress as he would with a more professional programme but it was still miles better than the alternative. He learnt more in a week of home aba than he did with 15 hours week nursery with an untrained 1:1.

We also tried to get him into the local mld/ autism school nursery as we could not really afford the aba, but he was turned down for a statement which led to long delays. You can start the statementing process without a diagnosis for young children with severe and complex needs you only need one overarching report eg EP - in theory - in reality you will be turned down as premature but truth is you would be turned down if you waited, we were told to wait a YEAR before applying. We didn't listen, it still took forever but at least we were in the appeal process when other parents were just starting out. It took 8 months to get a statement and 18 to get aba on the statement.Only a statement gives you legal rights you can enforce, without one you can be fobbed off forever. Look at ipsea.

My DS regressed at 2.3. I know that desperation you feel. I know it all seems urgent and I'm sorry to say that regressing won't matter to anyone but you. the professionals will not see that as a reason to hurry. To them regressive autism is still just autism. He will face the same delays as any other child seeking diagnosis and intervention. It took 6 months for an asd outreach teacher to even visit. then she did nothing of any use but gave generic advice we had long since read, tried and dismissed as inadequate.

Learning skills yourself is your best hope. Anything else will take months to materialise and then you may find it wasn't worth waiting for. If aba is out of reach then look at the local special school they often take children from 2.5.

But even the best intervention may not halt regression. Often children keep regressing even with aba - I suppose it's a biological process in the brain and then when the regression bottoms out they start moving forward. DS took 6 months to bottom out, he learnt nothing, then one day he started moving forward again and that has continued. I often kick myself for not starting aba sooner, but I actually think that as we had limited funds we started at the right time, caught that moment when he was ready to learn again and we just had enough money to get to the tribunal door. If we had started at the beginning of his regression we would have run out of money, we also saw incredible progress in those first weeks of aba which motivated us to keep going.Had we started when he was still regressing perhaps we would have lost faith in aba. You probably don't want to hear regression may last months - we found DS symptoms very volatile in those initial months, some days as you say he was changing in front of our eyes. But it may mean you have some time to figure out what to do and that these months are not as crucial as they seem. Recent evidence says contrary to what they used to think children who regress do no less well in the end than those who don't.

Caudwell charity fund aba,although their funds are well down. Cerebra fund speech therapy and a private pro aba salt can be a good place to start.

The very least you should get is portage. You can also self refer to speech therapy some nhs depts do drop ins. Apply for DLA we used that and direct payments to help pay for aba.

There have been some threads on here about online aba programmes.

There is a floor time lady in tower hamlets mind builders I think her company is called.

We completely lost our boy for many months, but now he is affectionate and loving as he ever was, he has learnt eye contact, he is gaining speech - slowly but it's there- he even lost his humour but that is back with a vengeance, he is exceptionally cheeky. It's been a long haul but I used to feel like DS had died and I was left with just a shell of a child and I don't feel that now. With a lot of hard work, day by day we have got him back.

There is nice easy read paperback called overcoming autism by Lynn koegel which is about play based Aba by a psych and a parent. It's not technical, but positive and hopeful. She says you may feel that nothing you will do will make a difference, but the reality is everything you do makes a difference. It was the first thing I read that made me feel the situation wasn't hopeless.

don't forget to take care of yourselves you are losing a child in a way and that's pretty tough but you do get through it.

BialystockandBloom Fri 17-Jun-11 21:04:56

Another recommendation for ABA here too. It is expensive, but certainly doesn't have to add up to anything like £45k per year. Actually I'm a bit surprised you were quoted that - who quoted that?

You could get a tutor to provide some hours (eg 15 hours a week, at £12 per hour, which would be £9k per year) You can also train up yourselves (or whoever is your ds's childcare provider if a childminder/nanny) and it will become part of your everyday parenting. You would need regular input from a supervisor to set new targets and give specific strategies for specific problems, so that would cost more.

Yes however you do it, it does cost money. But ime it is the best money we have ever spent. And it won't be forever - depending on progress (and starting so young you would see amazing progress) even just doing it for 2 years would make a huge difference.

Even if you do eventually get a dx, you won't be offered any practical support or therapy. ABA, whether you do it yourself or not, means you are actually doing something that will make a difference. I can almost guarantee that lll the 'support' offered even post-dx, particularly at preschool age will make absolutely no difference to your ds's behaviour or development. ABA will make all the difference in the world.

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