Fed up of the unreal world of being pre-diagnosis.(ASD)

[TotalChaos]

DS is 3.10, has severely delayed speech and comprehension, and I think a diagnosis of HFA is on the cards. 10 months down the NHS line, and 18 months after I first became concerned, we've managed to have one inconclusive SALT appointment, and it's now uncertain whether he even will be seen by joint clinic (paed/ed psych). It's like la la land - officially, noone is showing any interest in offering any help or support - while the gulf between DS and his peers widens. I am so so troubled by worries about how he will cope in Reception in September. I have tried my best to quiz schools about their attitudes towards SN/speech problems, but I suppose I have little faith that the system locally will offer adequate support, given the little that has happened so far. Anyone got any advice about how to cope?

((TotalChaos)). It makes me so angry that help a child needs can be dependant on where they live.
I can't help with the practical issues of arranging appointments, but give me a week and I'll send you up some things to help him with his communication .

This is going to sound dense, but how do they tell the difference between ASD, GDD and other developmental orders?
DD2 has severe CP and can't speak (she's 3.10) but no-one will make any diagnosis of her mental/cognitive ability before at least 5 because it could be just her CP that has led to her delays in understanding. When I asked about the possibility of ASD (as her brother has Aspergers) they just said it would be impossible to tell the difference in a child with CP and they would just put her down as 'menatlly retarded' if it became apparent that she wasn't understanding stuff. They said without communication its impossible to tell. The doc also asked me why it mattered. If a child didn't understand then they didn't understand.
I got pretty upset because to me there's a huge difference between a learning disability like MR (or GDD I think its called now) and a learning difficulty like Aspergers where problems can be overcome with the right input. If her IQ is low and her understanding low because her brain is damaged then how you react is very different to if she has ASD which can have various techniques to 'get inside' the child.
So, to put it bluntly, are there surefire methods to tell the differnec between ASD and MR? I need to be armed with some stuff (preferably heavy to beat him about the head) for the doc.

Ditto TC i feel the same bout dd.

we too were told over a year ago that she more than likely is HFA but noone will take responsibility for dx,ing her and its driving me MAD, we are now set to go to another hospital where they will asess her all over again.
she too starts school in september and i know she wont cope without support and she,s been turned down for asessment by the LEA.

IT really sucks doesnt it.

I truly sympathise. We are just going through the same thing with my son, who is 2 yrs 5 months and very language delayed. It has been a horribly uncertain and worrying time. It has taken 6 months of ENT and SALT appointments and we are hopefully just about to see a pediatrician. The experts in the ASD section on the website allexperts.com are fantastic, you can email them a query and they generally respond within 24 hours. They can give you diagnostic help plus advice on what to do next. I also found the National Autistic Society very helpful. They told me to ask for a referral to a specialised centre. You need a formal diagnosis (ideally of AS or HFA) so you can proceed with having your child statemented and given extra help in school if this is deemed necessary. The NAS can give you details of specialists in your area. Good luck!

Hi Total,

Don't have any advice for you, but totally understand the world of pre-diagnosis asd My DD is 2.1, and I had been concerned about her since she was about 2 months, but NO ONE would take me seriously. We have some help with developmental intervention service, but's it's really not much at the moment. Still awaiting all the clinic appointments, and like yourself, I am watching my poor daughter falling further and further behind. Really glad I don't have to think about school til next year tbh.

Hope somebody gets their finger out soon for you and your DS.

Not a dense question at all, and one I'm not 100% sure of the answer to, particularly as I've not gone down the diagnostic route yet. I understand that with ASD there tends to be an asymmetry - that speech and social skills are way behind, whereas other skills, physical and motor and cognitive wise are far closer to age appropriate. To some extent ASD and even a specific language impairment but nowt else wrong can be considered learning disabilities - so I wouldn't assume that ASD is a far "better" diagnosis than GDD.

Awful the attitude of the doc though - that they are dustbinning her because of her CP, and not interested in finding out more about her capabilities.

I guess cos her physical/motor skills are at a newborn level then getting a diagnosis of ASD over MR is going to be difficult.
Least we don't have to worry about dyspraxia like with ds2!

just been doing a quick google about diagnosis of GDD, you might find this link informative-

pedclerk.bsd.uchicago.edu/devdelay.html

now to answer everyone else who kindly replied - thanks very much bullet, jenk, KT and helewele. I have stupidly put my head in the sand and not felt up to calling NAS to ask for advice about what to do next, but I think I will need to, as I want to try applying for a statement by March. I had hoped that he would have a diagnosis by then, but god knows. SALT is meant to be observing him once he starts new nursery at end jan, so hopefully that will kickstart the system somehow.

why are you waiting to apply for a statement? Ask for one now cos it takes blardy ages.

need - had set myself the deadline of March because he was meant to be seen by paed in Jan/Feb - so was hoping to have a diagnosis before applying - but you are probably right, that if he's not going to see a paed by March, why wait. guess i'll be frequenting the ipsea website then....

no start it now, we started dd,s in november and they have turned her down for asessment and thats with paed suspecting ASD, we have to wait for a sendist date which is going to be a couple of months off and her statement prob wont be finalised until the summer.

needmorecoffe- have a look at Doug Biklen's stuff. He wrote a book about using facilitated communication with people with learning disabilities as well as ASD - but his ideas behind learning abilities in the learning disabled is interesting.

My son's dx is severe ASD & severe learning difficulties - but actually I think his capacity for learning is the same as his NT brothers- but he can't learn by their methods as his language is buggered as is a lot of his ability to produce a movement on demand on time (so his memory is exceptional for example, but he needs to be taught to read in a different way than his NT brothers).

Although their disabilities are very different I find reading your posts about your dd rings many bells to the sorts of things we've had to deal with in ds1's case.

TC- are you seeing an Ed psych at all? They're the person to hassle. You could put in a statemeting request- even if you don't get it it will bring an ed psych out of the woodwork and get your ds known.

yurt - nope, no ed psych - IIRC it's same list as paed - meant to be a joint clinic. Or are ed psychs different from child psychologists? After 8 months on the joint clinic list, I was told that because the general SALT list was shorter than the joint clinic list, they were booting kids off the joint clinic list to see SALT, and SALT would then decide whether joint clinic referral was necessary .

Unbelievably though DS has had a brief amount of contact with a child psychologist who was TEACHING a Hanen course at a Surestart centre WTF a psychologist do a course that a SALT should be doing? The child psych was tactless and utterly useless - when I did try and get any help or info - I was just told how well I was doing getting him on the waiting list for joint clinic, and there was nothing more to be done at at this stage.

ed psychs are employed by the LEA- different from clinical psychs (employed by the HA) If you put in a statement request you will get seen by an ed psych. They can't really diagnose (clinical psychs can) but it will bring your ds into the LEA's radar- helpful for school start....

thanks for the explanation about the ed psych, yurt.

IME, ed psychs are the least use for any kind of actual clearcut descriptions of what children are or need (my son's very experienced ed psych is well known round here for the positive pictures he paints of children in their ed psych reports...but they are encouraged to keep their recommendations to the minimum or be very vague about what kids needs as the LEAs don't want to fund any extra 'stuff'.) They tend to be very vague and give very vague 'suggestions' to the school and 'support' the school.

Clinical psychs and the like are actually supposed to diagnose (in some places) but won't usually work with the school.

It's so area dependent. Shouldn't be. Good luck with it all.

thanks Yurt. I think dd has 'difficulties rather than learning disabilities if you see what I mean. Difficulties caused by her partial sight and by not being able to do anything physically. But probably processing issues as she has damage in her thalamus and of course all signals from the senses go through there first. She can't listen and see at the same time for example.
Its fustrating because while she gets physio (1 hour a month big wow) no-one is supporting her cognitive development. I think ABA and other stuff aimed at ASD might help but when I mention it the doctors just roll eyes.
How can I find out about ABA as an individual?

I understand how frustrated you are trying to get a diagnosis and then help with your child's learning. Getting a diagnosis is not a magic answer in itself as, as we all know there is a shortage of suitable help and resources for SN children, but it will be a starting point at least. This time last year we were still stuck in the endless loop of Child Development Centre appointments where all that was ever said was ' It does look a but worrying maybe you should come back in 6 months and see if he has got any better?'. We finally managed to get DS diagnosed as ASD this September at a hospital that has an autism unit. Since then we have had some help via his nursery and his speech and understanding has improved. At the time he was diagnosed he was 17th in the list to be assessed for autism at the CDC and I've heard the process of assessment they do is quite long and drawn out. At the hospital the professor observed him for half an hour then told us the obvious, that he has autism. Of course your son might not have ASD/HFA but it won't be easy or quick to get it ruled out through normal NHS routes.

Ah NMC I haven't got a clue how they do the udnerstanding bit- ds3's ed psych report says (sorry but this make me laugh)

'DS3's ability to perform in all tests was eprfectly normal, indicating a ormal intellect. However tests had to be abandoned as he could not understand how to complete them due to his received language delays'

I mean- PMSL

TC- we're at BIBIC next week, do yu want me to get you an info pack? have to pick up a few for people on here anyhow, basically they kept us sane during the extended pre-dx periods with ds1. I know its a long journey but they have boarding rooms which helps a bit.

FWIW ds3 started school this week 9admiteedly with 1-1 all the time until Easter, because of him attending part time) and seems happy- but v tired and clingy. Do have to laugh at stuff in his link book 'DS3 was very insistent about using the PC today'

very insistent? Taht's putting it mildly I'll bet- did he pull youa round for about an hour screeching dawin (drawing, the PC based activity he likes) repeatedly by any chance?

Peschy - doesn't necessarily sound as if the ed psych was all that hot on administering the cognitive tests either...

anyway - yes please to an info pack from bibic - dh is getting a car shortly so that makes the west country rather more accessible than formerly. Also - cheeky ask - could you possibly e-mail me a copy of your letter requesting assessment for a statement for DS3 - I have looked on ipsea website but am struggling on how to fill in the bits as to why m/s school witout support wouldn't fulfil his needs in the right sort of technical jargon, so hoped to pick your brains!

went to local asd and social communication disorders group today - which enhanced the unreal feeling - like DS isn't NT, but that the mums to kids with ASD didn't think he was ASD. feeling like DS and me don't fit anywhere right now.

the mums there started off by saying that S reminded them of their auti kids at that age - but then after they saw him play and talk a bit, they reckoned he probably didn't have ASD but just speech delay(!). They were still ok for me to come along, and were giving me advice about dealing with LEA as I want him to go to a language unit, but I did feel they were patronising me a bit as being worried well. Maybe I need to find a local Aspergers support group?????

I think a short time to make such remarks to be honest. I had so many people tell me my own dd wasn't asd. I hope they are right though tc. All children with asd's are so different and it's hard to tell but as I said let's hope it is a speech delay!!!!
So sorry you are going through this I remember how worried I was. I am always on msn if you need a chat x

Thanks for the reply blossomhill, don't worry I'm not taking their diagnostic skills seriously - I do think that DS is probably quite a lot like your DD - so maybe it just won't be possible for him to get diagnosis yet.

I suppose I did expect to feel at home at an ASD support group, but evidently not to be!!!

TC - We're in that same kind of 'no man's land' with ds2. He has a dx but it's not as obvious as his brother's ASD was at that age. He's not NT but because you can only tell that he has SN when you know what you're looking for I feel a bit out of place with him IYSWIM.

The ironic thing is that in many ways ds2 actually has a harder time of it than ds1 despite supposedly being more HF.