DD just diagnosed with autism :-(

[returnvisit]

My DD aged 3 has been diagnosed with autism.

She is a year away from going into reception class and is August born.

She has difficulties with social interaction and communication.

She repeats everything we say but doesn't understand what she is saying.

We have been told by the consultant to focus on her language which should help speed up the rest of her development.

I am going to apply for a statement and my DD is waiting to be seen by an educational psychologist.

She is in nursery at the moment in the morning but am unsure how much she is picking up from there if you see what I mean, she needs one to one or she loses focus and her attention in limited.

She has been referred for specialist SALT.

She is a happy girl, not hyper sensitive , eats normally, no physical problems. Her language and social skills are her problem areas.

I'm unsure where to turn and what to do for.i want to they to do my best and progress her for this year. I don't want to delay her a year to start school, am unsure even if my LEA do this.

I am considering private therapy. Have heard about ABA but don't know if this is best for her.

Any ideas on what I can do next?

TIA

Hi. My dd has also been diagnosed with autism at 3 (February this year). My dd sounds very similar to your dd apart from two things. 1/ my dd does not copy language, we have approx 6 words at the mo (not all discernible by others - had 17 words a year ago ). 2/ my dd has mobility issues due to hypermobility and hypotonia. However me and Dp are agreed that our major concern is dd's language at the moment. We were also told that language was the key to how dd progresses.

We live in Scotland where there are no statements and the set up is a bit different but this is what we're doing at moment......

Dd currently attends a child and family centre two mornings a week with 1:1 support. We go to a support group once a week. We have regular speech therapy, OT and physio. Dd will start nursery in the afternoons from end of August with (I'm told!) 1:1 support for 10 of the 12.5 hrs. Dd would under normal circumstances be due to start school next August aged 4.7 years. Our intake is slightly different. We will be deferring dd's entry by a year to give her more time to develop her communication skills. Dd has a January birthday which would make her one of the youngest as the intake ends with February not August up here.

There is a charity up here that provides ABA for families with children aged 3-12 years with Autism. We have joined the waiting list for this service, hoping that by learning the principles of the method/technique tackling one issue, we'll be able to tackle other issues ourselves.

Depending on progress over the next year, we will start looking round schools from next Aug/Sept. currently we'd probably be aiming for a place in a communication unit attached to mainstream primary, but time will tell.

HTH.

Hi there returnvisit. It's a really painful time, but you've done well to get a DX so early. I don't have experience of ABA but others on here do. In the meantime can I recommend More Than Words which is a really good book that was recommended by my DS's lovely SALT and many on this board have used it?

Well done on starting the statementing process. It can be a long old haul depending on your LA, but again, there are lots of experienced people on this board who have had every type of experience, from a really smooth ride to fighting the LA at tribunals, so you are in the right place. Have a look at the SEN COP, which is still current law for the next year or so at least. You will get to know this inside out!

Hope you are feeling OK. MN SN board is a good place for support and because we've all been through something similar, you'll get empathy but no pitying.

Hi thanks for the replies.

I have purchased the more than words book, it seems very good.

My dd is currently in a private nursery buti am considering moving her to a school nursery in September, I have managed to get a place. My only concern is that she has three IDPs via SENCO in that setting and we are going to apply for a statement. If I move her will she have to have another three IDP'S in that setting before we can apply for a statement?

Sorry for your news. It will get better and easier to deal with, but we all know the hit-by-a-train feeling of devastation when you get that dx.

Have only got a minute now but we do ABA for ds (5yo, diagnosed at 3.6) who sounds a bit similar to yours eg echololia, repeating back questions. Our ABA is very much focused on language/communication as well as interaction and play skills. It has been brilliant for him, and for us. He has made amazing progress. I'm happy to give you more info, please feel free to pm me or ask on the board

Oh yes please bialy I was wondering about aba or whether to get a private speech therapist to work on her communication.

Has the aba helped.? How much isn't and how doesn't work .?

Hello Ladies,

I was wondering if I could gatecrash?

A very good friend has just got the diagnosis of autism in her nearly 4 year old. My DS is 6 months younger, and friend has always been a very competitive / comparing parent. I've generally replied with "they all develop differently, and look how good yours is at XYZ". They will however be in the same school year.

Firstly, is there anything I can do to help my friend and her child?

Secondly, and she may well stop this now, if you were verbally comparing your child to NT child (assuming my DS is NT), what sort of response would be best?

Just ignore me if I'd totally derailing what you'd like to be a support thread.

I hope all your children continue to fulfil their potential, which what sounds like amazing parental support.

nextphase, it's a perfectly valid question, but you might be better to start your own thread, as people with advice may not spot you here.

Competitive parenting is something you often quickly grow out of with a DC with SN! TBH, it's never a good thing, but I have found it quite hurtful when people have continued with it even though it's obvious my DS has SN. But please be aware that a DX of ASD (Autism Spectrum Disorder) doesn't necessarily mean low academic ability and your friend will still be proud of achievements her DS makes. In fact, possibly even more proud. If her character is competitive, she may not change that much... I would try not to get into comparisons if at all possible.

My best advice is to be understanding but try to avoid pity. Her DC hasn't changed, but her hopes and dreams will have changed so she will be quite fragile. Please, please don't play down any concerns she may have. It is actually not at all helpful to say things like, 'Well, that's not so bad, lots of children do that, or have that behaviour.' It might seem like you are trying comfort her but it is very annoying and it seems like people don't believe the DX or are underestimating the worry and hurt. Acknowledge any concerns, maybe with 'That must be very hard, is there anything I can do to help?'

You sound like a good friend, I'm sure she is lucky to have you. Having a DC with SN doesn't turn you into a saint overnight. God does not give DC with special needs to special people, which is something I have been told too often. Character flaws will still be there, but your friend will need her real friends to stick by her. It's amazing how many 'friends' I lost, they just stopped calling. Autism isn't catching!

Social skills are something that DC with ASD struggle with and playdates and party invites are in short supply so please try to keep them coming, they need social skills practice more than most.

To the OP: I am one of these people who is practically evangelical about ABA (but with very valid reasons: both as a scientist, having read all the evidence and literature, and as a mother whose child has been doing ABA for six weeks and has already changed markedly). I would recommend doing what I did, do your reading and research about it (try PEACH, look up all the sites you can find on ABA and autism including Ambitious about Autism and PEAT, search here on Mumsnet for all the many threads about ASD and ABA and read them all) and then seriously considering going for it to the maximum you can afford. PM me if you would like any more help and advice off-board.

Nextphase you do sound very nice. I would certainly advise anyone who has a friend/acquaintance whose child has been diagnosed with ASD to please refrain from saying (in hushed sympathetic, supposed to be comforting tones) "oh, how dreadful", or similar. Also please no "oh, but he is so beautiful, how can that be, how sad, what a shame" etc.

Also agree with EllenJane that saying supposedly "optimistic" things like "oh, he'll be fine", "lots of children do that", etc is a no-no. It really does not help and I want to say back "well no, lots of three year olds don't in fact do that, only the autistic ones actually"....

I realise, reading that back, that I am advising people to be neither pessimistic nor optimistic. I suppose that is really a big ask, to expect people to get the balance just right! But even if people just try, it is a help...!

Thedudesmummy, I have made contact with a case manager (cant rememebr title, the one that creates the plan ) and was interested but when I went to CAHMS and they told us to focus on her communication, I said no to ABA and got in touch with a private speech therapist instead. Which route shall I take.?

Dd2 is due to have specialist SALT on NHS but it's rubbish from my experience with DD1 and I don't want to take the risk.

TIA

Hi return I would recommend ABA. Peach follow the VB(verbal behaviour) strand of ABA which focuses on communication first and foremost. A good ABA program should encompass elements of SALT for communication and OT for working on gross and fine motor skills amongst others. Unless the SALT you have found specialises in or have experience of working with children with AsD, I wouldn't even bother as it will be a waste of money. Been there, done that.

Seriously go with ABA and if you need any more information, ask on the main board, there are plenty of posters who will be able to explain it better than I have.
HTH.

Well, we have both a private speech therapist and an ABA programme (I consider her to be part of the team and she is in on the meetings, planning etc). I would second dev and continue to strongly recommend ABA (with a really good consultant).

PS advice given to you by the NHS/Social Services/Education Authority is unlikely to be helpful regarding ABA, the so-called developmental peadiatrician from the NHS that we saw had never even heard of ABA. You have to do your own research and go your own way.

Yes the consultant at CAMHS knew nothing about ABA.

Dev - the private therapist has a specialism in ASD.

I'm maybe doubting ABA has I know nothing about it whereas I have experience of SALT.

Thedudesmummy - can u outline what ABA involves?

Thanks for the replies.

My advice on beginning to research ABA (just my opinion):

Go to www.peach.org.uk/ and read the whole site as a good start.

Read Catherine Maurice's book "Let Me Hear Your Voice" and then get:

www.amazon.co.uk/Understanding-Applied-Behavior-Analysis-Professionals/dp/1843108607/ref=sr_1_1?ie=UTF8&qid=1343568080&sr=8-1

www.amazon.co.uk/The-Verbal-Behavior-Approach-Disorders/dp/1843108526/ref=sr_1_5?ie=UTF8&qid=1343568224&sr=8-5

You will then have a really good idea. Also: PEACH run one-day introductory courses (free) for parents. And try Ambitious About Autism at Treehouse School if you are in London. They run two-day courses (not free but reasonable) on specific issues like dealing with challenging behavioiur, and because it is all done on ABA principles, you get a good idea of the approach in practice.

As I said, don't expect much help from professionals (except those you employ yourself!).

Thinking about this, I have put together a little library (well, a shelf) of books and journals that my family and my ABA team have access to and can all borrow and read. They are all books I feel have been helpful or useful (I have also bought some where the ethos or writing didn't fit with me for some reason, I did not put these on the shelf, so it a selective shelf of books, not just every random book about ASD/ABA!). Does anyone feel it would be helpful for me to share the contents of my selected library on this board? Or would that come across as patronising and dictating to people what they should read/find helpful?

DS1 has a home ABA programme, and he is also seen by the NHS SALT who specialises in ASD and an OT. We started the ABA programme back in January but weren't seen by the SALT and OT until April. The advice they gave us was word for word what we had already been told by our ABA consultant. So that tells you what a good ABA consultant is capable of.

My personal recommendation would be this book Motivation and Reinforcement. This is a bit expensive but explains the Verbal behaviour program in detail and it will also allow you to make a start at home giving you a flavour of what ABA can do for you.

I would still highly recommend a BCBA approved consultant as they will be able to guide you in what strategies to use at what stage of development for your child.

Sorry just realised that you asked about ABA. I have got to dash but will post more info about ABA tonight. In a nutsehell, its method encourages the parents and therapist to modify the environment in ways that teach them to be more successful using positive reinforcement. Will post more later.

Yes, I second a recommendation for the Motivation and Reinforcement book too. I just did not put it as a first step specifically because it is rather pricey!

Also second what dev says about getting a consultant if at all possible. The books give great background and enable understanding, and let you make choices about what to do, but trying to do DIY ABA using books (while probably better than nothing IMO) is not advised.

That is not to say that you cannot use ABA principles in all everyday care of and interactions with your children (not just ASD children either!). Actually, that reminds me I should have recommended this book right at the beginning in my above post about books: Do read "Dont Shoot the Dog" by Karen Pryor. You can train anyone using ABA principles (yes even including your husband! )

I am not very good at explaining things but I have copied some stuff from the Book about VB.

"the VB approach to ABA is more than merely teaching communicative intent. One of its most important advancements involves understanding how to capture and use a child's naturally occurring motivation to give him a reason to learn the skills you want to Tracy him."

An example from the book.

"instead of sitting your child at a table, yo would take the child outside and play a game that involves running around and having fun. This would create a motivation of thirst. Once you have created the motivation in your child, you only need to prepare a cup of water and wait for him to obtain it. When he does, you now have the optimal situation in which to teach. What you would teach your child depends offing his current level of ability. It could be to say the word water, make a sign for the water or might be to use the full sentence asking for water. You will use water itself as the natural reinforcement for the successful completion of this skill. Outside of your teaching setting, the skill of asking for water will likely followed by receiving water. Using this naturally occurring consequence as the reinforcer for your teaching will make the jump to maintained imdependent use of this skill easier for he child."

Phew, hope that helps. If you want to know more, try searching for posts about ABA on this board or start a topic asking for information, there are a number of people who have successfully used it and would be more than happy to share.

That should say teach not Tracy..