Brand new to autism & flailing around a bit

[Toppy]

Hi - I introduced myself in a post here about a month ago. I have a little boy aged almost 3 who was diagnosed with severe speech delay at the beginning of the year. We had a second multidisciplinary assessment 3 weeks ago and got a diagnosis of autism.

I really meant to come straight back here where everyone had been so supportive and had even arranged to call Spur (hi Spur) but was so in shock at the diagnosis (despite sort of suspecting it) that I went underground and have not been able to talk to anyone at all about it. DH, who came good and was an absolute star in the meeting, was so in shock that he gave DD a bath still in her nappy that night !
Now having emerged from a bit of a black hole of tears/anger/denial/looking at DS like he was made of glass I've picked myself up and decided to get busy working out what DS needs.

We are currently in a bit of an information vacuum. They gave their diagnosis, said specialist ST would be in touch, gave us some leaflets and advised us to call NAS before packing us on our way - all the while all I could think to ask was would DS be able to have a girlfriend when he was older !

I came home and read the leaflets, went on the internet and felt sick at a lot of what I read. I think DS is fairly high functioning but that may just be more denial. They said he was too young to put on the scale but when I re-read all the lovely replies I got from my first post I realised that 'plain autism' was a good diagnosis to get in terms of help. I am hoping once we sort out some sort of specialist provision for him those who work with him will give us some indication of how mild/severe his issues are.

How does one decide what is best ? From my limited reading and trawl of MN old threads it seems there are a couple of different paths....a home prog using methods like Son Rise, ABA etc or a specialist nursery/school most of which seem to use TEACH (look at me using all the lingo when I have little idea what I am writing about !) At the moment I feel that the latter approach is what it going to work for us right now in terms of our current comfort zone and finances. Am I missing anything ?

Does anyone tell you what your child needs ? We were told the written report (not expected for a couple of months due to Christmas and the fact the typist has resigned) would go to an Ed Pysch who would want to then visit DS. We are going to do statementing ourselves rather than through the nursery but I am not sure when to begin. Hospital told us to wait until Ed Pysch has been sent the report.

Can anyone explain in what order things happen from diagnosis, report, Ed pysch, statementing etc. I guess it is that order but am not entirely sure if I have to call council to ask if Ed Pysch has been appointed. Also what is an Ed Pysch ?? Like I said we are sort of in limbo (again) and feel a bit on our own with this new diagnosis which I hope will end when the new speech therapy kicks in sometime in the new year

Sorry for another long post - I seem incapable of doing short openers

Hi Toppy

I don't the answers to most of your questions, but I will say Autism is a spectrum more than a scale, and your DS will be able to lots of things, and just not get the point of doing other things. He is your lovely little boy and, while it's totally natural to grieve for the son you thought you would have he will always be your bright spark.

He is as individual as any other three year old, and finding out what works for him will be down to trial and error. Your instinct is telling you to try TEACCH, so that's probably as good a place to start as any - you're the expert now.

All the best with it, hth

agree with everything said so far.

my dd1 was dx'd at just over 2.5. we have tried a variety f things with her - ABA home programme (part time, informal), support within a mainstream pre-school, a TEACCH based ASD pre-school, and she is now in an ABA school full time (she is now 6.6)

I could never have predicted, form the baby/toddler she was, where she would be now, and she continues to come on in leaps and bounds.

I would say don't ley finances dictate what approach you use. I know this is easy to say, but really, research the different mehtods - ask any questions you need to. there are loads of us here who have tried all manner of approaches.

No programme has to be absolute. It also doesn't have to be full time.

When we started our ABA programme, we were very part time - 15 hours a week - due in part to finances, and also because of our then comfort zone. I didn't want my 3 year old in a full time programme. Mayb I was rigth, maybe not. It worked for us, and more importantly for dd1.

Read around a LOT. This is a marathon, nt a sprint. take your time investigating, and digesting, and then set about achieving whatever approach you want to.

There is a wealth of info here - ask away. We have all been through (or are going through) statementing. we have all fought with the LA for one reason or another.

Hi toppy, just have time to say hello. I remember your other post. My ds got autism dx 6 months ago and is nearly 3, I am still flailing myself so don't have much advice, but MN is def the best place to look for info. Hugs.

Just got official diagnosis of autism for ds (3) this week but had been expecting it.

Not sure I have anything that useful to add and I have lots of conflicting feelings but Just wanted to say that at the moment is can be really hard not to focus on the negative aspects of autism and therapy.

From what I'm reading many talented autistic celebrate their autism as being a part of their character and part what makes them who they are. I know there are elements of DS that make him look at things differently than other children and challenge my own perpective on life.

I sometimes wish I could alter the world to better accommodate ds as opposed to mold him to fit in with the world.

Our autism assessment nurse recommended through the eyes of aliens by jasmine o'neal worth looking at if your just starting out.

Hello we started our journey when DS3 was about the same age.

We use ABA. My son was refused access to special school nursery despite Ed Psych recommendation - long story - but we now have a fulltime ABA programme funded by our LA (ordered by tribunal).

During the year he went parttime to mainstream nursery with 1:1 TA + SALT + Autism Outreach (and made no progress) and we did ABA parttime at home (15-20 hours a week - made loads of progress). We trained ourselves to be his tutors with use of an ABA supervisor. You can keep costs down by doing hours yourself / using family / student volunteers.You need to do ABA to prove it works to win it.

That said, like you, we would have taken the special nursery place if been offered it at the outset which was TEACCH based for same reasons - financial, practical, worth a try. Lots of places say they do TEACCH but really its just aspects of TEACCH and other approaches - eclectic- the evidence that there is for TEACCH is based on the full TEACCH model which is a very structured environment and not the way TEACCH is used in most special schools in UK. There is little evidence on the eclectic approach. Alot depends on the actual teacher and local info is the best source for that. Our LA really try and keep children they see as higher functioning out of special school and force them into mainstream. Only when mainstream fails will they consider funding anything else.

Research Autism is the NAS site on research but you can also get free research in December from this journal here

DS's IQ just goes up and up as he learns more how to demonstrate what he knows - its very hard to assess cognitive function accurately as ASD children often are not bothered to share what they know. But trust your instincts - we thought DS was bright and it is turning out that way.

If you get pushed to mainstream - even for while - you should be able to access some early years funding without a statement (ask the SEN officer at the COuncil or look on website) for 1:1 support at nursery and then get SALT and Autism Outreach. Our Outreach were awful but there are some good ones. Some mainstream schools have ASD units attached and they are worth a look. Some areas may have ASD nurseries. What I would say is that while access to mainstream children can become important, it is not that important at 3 for most children with ASD. The specialist teaching is more important and if HFA your DS can move on to mainstream parttime or fulltime once he's mastered language etc a bit more. I totally agree with you that you want to go for specialist teaching of one form or another - thats where the best evidence is. I have yet to meet a mainstream teacher who would know where to start with my DS. DS however remains in mainstream nursery - but is now supported by an ABA tutor and a home programme and that is working well.

Anything specialist will require a Statement to access it. Start the process now they have quite a long time frame to collect the evidence so the EP will have plenty of time to visit. We started the process in June 2009 - were refused and appealled - they then agreed to assess and got draft statement in Jan 2010 - appealled it as rubbish (no specialist support) and finally got to tribunal (after adjournment) in Oct 2010. So if you have a LA like mine they can drag it out for many months. The only plus point was that we had a year of useless outreach and mainstream teaching which we were able to point to as evidence for ABA.

Other things you can look at are PECS (you can go on a course yourself if you don't get support quickly via Pyramid) and Hanen Courses which are sometimes offered (parent training). Hanen books are worth a look when you start out.

Also ABA courses where you can get some training yourself eg PEACH or Autism Partnership do day workshops etc

Hopefully you will have a good EP who will support you in a specialist placement.

Wow - once again I am astounded at the level of support and quality of advice on here - thank you all so much. A month ago I knew nothing about ASD other than Rainman. Today I can just about keep up with most of the things you are mentioning (foreign language for anyone else I know in RL) which goes to show how quickly you feel you have to get up to speed when presented with a formal diagnosis.

We are going to be offered ST at the Child Dev't Unit (they use PECS there) along with music therapy in the New Year and I am on the waiting list for More Than Words but will just order the book now I think as it could be a while - the ITTTT was excellent.
One of the vibes I am sort of getting the more posts I read is that you almost have to try out different things to see what works for your child which at the moment feels an uncomfortable prospect but I can't see any other way round this 'experimentation' - I have no idea what will work at the moment and am obviously staying within my current comfort zone. I suspect things will change as I wise-up with time. Also I think we have been swayed by what is currently available in our borough...

My LEA has a very good special school for children with a diagnosis of autism. I have been tipped off by a couple of professionals that on that basis we are extremely unlikely to be offered anything other than this provision or mainstream. I have therefore decided that my focus in the statementing process is going to be how mainstream is failing him now despite them trying to accommodate his (undiagnosed) special needs this year . He has been visited by a SEN lady from council Early Years Team twice who gave him IEPs and our current NHS ST has observed him there and listed areas to work on so there is a little bit of paperwork in place. I am about to work with nursery to get some more in place before ES comes in. They are sympathetic and have told me he needs one on one though have not indicated whether they are the right place for him.

I am worried about mainstream - I am certain he is a very bright little boy but he is just slipping though the net at his current nursery. Unless constantly managed to keep focused or rooted (during 'circle time') he is free to wander quietly on his own and get absorbed in the thing that is on his agenda. At the same time I worry that he might get sucked into a special school never to re-emerge but I am sure this is beginners fear. This school (with nursery provision) appears to have getting children back in mainstream as soon as they are ready as a top priority which has got to be good.

I guess my question from this post is give that my borough has its own Special School should I focus my statementing efforts on getting him in there in case they suggest mainstream.
I keep hearing that provision is on a needs basis not a diagnosis basis - who decides what his needs are (is it the EP (still not sure what an EP does, anyone?)

thanks again (must stop writing essays !)

Hi Toppy,

Much useful advice from others already...but wanted to give you some hope for the future in case it helps. Can't guarantee anything as every child is different...but I'm on the autism spectrum (in the middle of it) and have several other disabilities...and I'm a mum and married to a lovely (equally autistic and very dyslexic and dyspraxic) hubby and have a ds who is now 18 and is a rugby player and a school Prefect and has good friends and good results....and he's on the autism spectrum and dyslexic and has specific learning difficulties.

If you looked at the way we all started out, and read the literature, logically we should be in a care home. We're not.

What makes a difference for a child on the autism spectrum isn't their IQ, bizarrely. It's their social skills. (Recent research confirms this). IQ is pretty irrelevant to how we turn out, unless we've got a very very low IQ and speech and language difficulties that keep going into teens and adult life.

If you can concentrate on teaching your child social skills and how to read the main emotions on people's faces - slowly, using really big expressions and really clear methods - he'll stand the best possible chance. Look for schools that will do all they can to support that and encourage him and work with him. Cheerful head teachers and cheerful special needs co-ordinators make a huge difference, we found.

May I ask which county you are in?.

A Statement is a legally binding document that will properly outline his additional support needs.

An Ed Pysch is short for an Educational Pyschologist. This person will make recommendations re his educational needs and report same to the LEA.

I would write asap to your LEA and ask for your DS to be assessed. You would need a statement anyway to access a special school.
If they refuse (which they often do) appeal their crass decision.

If you are wondering what to write then IPSEA www.ipsea.org.uk have model letters you can use. This is also a helpful website re the statementing process generally and tells you what you need to know. You would need to write to the Chief Education Officer at your LEA and give this person six weeks to reply.

Ah Amberlight - that is just what I needed to read this morning. Its given me the warm fuzzies! Very good point about the social skills over the IQ being key to moving through life more easily. I am going to really bear that in mind.

Attila - we are in Hammersmith and Fulham. I have no idea what sort of reputation or track record it has in this field as we are so new to it.
The medical team that diagnosed DS were very keen for us to wait until the report is issued in written form (to us and I assume the LEA) before starting Statementing. Not sure why - I guess everything is more joined up if Health and Education have shared their info before I pick up the phone ?

Don't wait!

This is just a delaying tactic.

when you write for SA, then the LA takes 6 weeks to decide if they will assess. then you have a furhter period of time to get your submissions in. and even then, if you still don't have a report, you can submit what you do have and inform them this one is to follow on.

Health and Education will not share info without your express permission. and even then, it will not get logged into a SA file uless you submit it.

Get the ball rollign now, honestly. Ther eis no point waiting. there are enough delays in the system anyway (it took us 3 years to get a statement or dd1. admittedly we were an extreme case, but even getting to the first draft took over a year...)

Yes you sound like an old hand already. Collect lots of evidence on mainstream. The next step is to get the 1:1 in place and set some very specific targets for them to achieve not the woolly kind but ones you can actually measure as that way if they are not met you have evidence mainstream is not enough. Children move in and out of special school - the one we originally wanted was same moved children on as soon as poss, but some children won't manage and will come back eg sometimes at secondary. Its very fluid in and out of special school but you won't find much expertise on social skills, language etc in mainstream IME.

Various professionals will be asked about need SALT, EP, Autism Outreach and mainstream nursery. Usually its the EP who is top of the tree except in my case where what he recommended was deemed too expensive. They should take your preference into account - but don't bet on it. You won't get into special school without a statement also if you don't start the clock ticking nothing will happen now until January.