Autism Advice - first meeting with paediatrician

[jemmm]

Hi,

We've had concerns about our (nearly) two year old male twin for sometime now. Recently, we got our excellent HV to have a look at him and within no time, we had appts. with a speech therapist, who immediately refered us to a consultant paediatrician at Harrogate CDC.

Everyone appears to be looking at autism. And certainly that's what we think is at the root of this. There's stacks of ticked boxes next to the symptoms in each of the three key areas.

After an initial burst of activity, I think we feel a little at sea, and we're hearing bits and pieces about the consultant, that contradict what we understand to be the best way forward.

In short, DS is nearly two, and we've heard that early diagnosis and intervention leads to significantly better outcomes - we obviously want access to the resources and services available - and are unsure whether diagnosis is necessary for this.

We've also heard that diagnosis can take a "significant amount of time" (years?), and that the consultant we are seeing won't diagnose until the age of seven.

Is this usual - or are just hearing a touch of gossip. Has anyone any advice generally about the first appt. or about Harrogate CDC specifically...

Sorry to rant - help!

J+E

Yes that's what I meant too - not that the SALT knows there is something more appropriate but does not care, most are nice people etc, it is just down to the lack of training and wider experience. SALTs maybe tend to see ASD children as failed or botched versions of NT children and see only the problems/deficits - whereas those interested in autism see the potentials. My current NHS SALT is lovely as a person but I don't think she has ever worked 1-1 with an autistic child over any period of time.

our SALT is still assessing ds for over a year now and denies his ASD, and tries to give me alternative reasons, that just don't add up to me. all very frustrating, but having another review in 6 months!

"It annoys when the child is labelled a failure not the means of teaching and support"

Yes.
You know what the mantra is in Direct instruction?ABA?

If the learner hasn't learnt, the teacher (or therapist or parent or trainer)hasn't taught.

'This seems to happen all the time - someone will recommend what they know about rather than assessing the child's needs'

Yes.
This is why you need to ask many questions about the training and expertise of SALTs.

As a SALT myself, I know many paed. salts who 9as they would freely admit) ae completely out of their comfort zones unless dealing with basic delays or phonological issues. Pointless really, as most of these things don't really need specialist intervention.

The whole thing is, quite frankly, bonkers.

And a year assessing is madness.
What the hell is the point??

Bloody do something and soon.

A-hem - what happened to my thread ;-)

Thank you all very much for the input.

We've been given some "home work" by the SALT - she's given us some photocopies from "More than Words", and we're also working on Makaton. I have to be honest and say that right now DS's twin sister and her elder brother are really enjoying the signing - not sure we're making any great steps with the one who matters though - that said it's very early days, and there has been the odd sign that we might get some where.

I'm interested in PECS - but to be honest, right now - I just don't think he'd get it at all.

Frankly, right now, I feel I need much more input from professionals - two one hour sessions with a SALT (who appears to have disappeared by the way), isn't going to make anyone an expert. What's more, to be of maximum use, this stuff needs passing onto Grandparents, etc. and I haven't the skills for that.

Margot and Mrsturnip... I think we're all saying the same thing - we could make these things work, if we had the right help/training. I've already got the folders lined up and several reams of a4 scribble - several people have suggested that autism is essentially a long battle with authority for appropriate services. I've started the battle with social services today to see what help we can get with DS's twin sister, a. so that she gets appropriate input/stimulation, which isn't always the case now, and b. so taht we can really go for it with DS.

Interesting that you said your DS was similar Margot, the SALT stressed that she thought DS was very visual too.

Jasdox - portage is apparently on the way - we sent consent forms off weeks ago - intend to chase that tomorrow. Glad it worked for you. That said having to wait another 6 months for assesment seems ridiculous - where are you?

"If the learner hasn't learnt, the teacher (or therapist or parent or trainer)hasn't taught." I maybe using that generally in life from now on - cool line Moondog.

Speaking more generally, and clearly with very little experience so far - the thing I'm finding really frustrating right now is how disparate provision of service appears; health (CDC, GP, portage, HV's), Social services, Education etc and uncoordinated they all are - though I guess this may change after our meeting at the CDC - go on someone cheer me up and tell me I'll be appointed a personal point of contact with a 24/7 mobile number. Please?

Jemmm

My belief is that (given the right support and help to implement it properly) PECS works well with the children who really aren't able to pick up anything else. It can be taught when a child has no imitation skills, when they have no understanding and it can be physically prompted (essential). My son is 10 years old, severely autistic, non-verbal and limited receptive language but he picked up PECS really quickly once we introduced it properly (with correct pompting and strong enough reinforcers). He is a whizz at PECS, and first learned it age just 3.

On the 2 day workshop they show a very moving video of a very severely autistic adult who has no way of communicating and never had done. 30 odd years nothing- he picked up PECS in one session (obvioulsy not the whole thing but was exchanging a card for pretzels by the end of one session).

If nothing else is working. If your son can't copy 'do this' (your command) then I'd really start asking people to help implement PECS. And as Moondog says-check their training.

If you're anywhere near Devon I'll gladly come and get you going with it.

Jemmm, if I were you, i owuld round up all your family members, and then write to SALT saying
We are all available for x hours on the following dates. Please can you come nad give us some training so that we canb learn how to help our son.

I'm with Saintly on the PECS.Get on a course,may well be the best thing you will ever do for your child.

Unfortunately you have to be pro-active and take the reins. There just isn't enoguh SALT support to go around so you have to think carefully of how best to make use oif this extremely limited resource (oh and complaining like buggery to powers that be that we need more SALTs).

Jemmm, OMG you could be describing my ds, how old is your ds. Mine is 2.10 he had severe refulx which he was on meds for and we put his delays down to that aswell. My ds does all those hings yours does and walk on tip toes at all times, he is also non verbal. We have our second appointment with the paed in may.

I'm not anti PECs - just anti lack of proper assessment/training. We had two bites of the PECS cherry. One at aged 2.6 , we used a private SALT as the NHS SALT said it was 'too soon' even though he was non verbal. It did not work probably because the SALT was working on her own and was not experienced enough. I now realise she was rushing through the early stages. We were given PECS again when DS1 was 4 and verbal for all basic daily needs. This time the SALT was far better trained in basic PECS and the stages but we never found a use for PECS as he could ask and comment spontaneously . I agreed to PECS hoping it might lead to sentence strips but the SALT did not know about that,

"to see what help we can get with DS's twin sister"

That is a really good idea - the best thing the LEA has done for us is to give DS2 a free nursery place so we can work with DS1 ourselves. NT children are what they are good with, when a child is not developmentally normal, they don't know what to do but are fearful of admitting it and asking the parents what they think/want.

The SALT didn't know about sentence strips???? She can't have even done the basic course. Grrrr @ people being paid to be useless.

Unacceptable for anyone to be trying to show someone how to use PECS without being on 2 day course (at least) themselves.
Doesn't stop them though wich is unforgivable.

An update... Have spoken to a local rep of NAS today, who has reassured me about the consultant and the CDC we're seeing next week. I've decided that the best course of action has to be to put my preconceptions to one side, and just see how it goes.

She also raved about her experience of PECS with her daughter - she picked it up at around 2-3 years as well. It's definitely something we'll be pursuing. Saintly - if you were a little closer, I'd take you up on the offer - we're in North Yorkshire though - still good to see you living up to that name - and thank you for the very generous offer!

Moondog - I've already primed my mother to sit in on a session. I'll be honest though - she's been a touch difficult in her response to this whole autism thing - I'm treading carefully. Parents - who'd have 'em... oh hang on, I am one now I guess ;-) Interestingly, as well as been "stretched", the local NAS person understands one of them is on maternity - so, that might explain things.

jjones - DS is 23 months old. I'll be interested to see what the paed says about the reflux - we've swung from worrying that there was something wrong, to blaming "delays" on reflux - helped by doctors who went along with that way of thinking.

Cyberseraphim - we're obviously massivley concerned about DS, but are also determined to not lose sight of DD and her needs - so balancing act needed. Can I ask where you are and how you went about getting the funding, was it any particular kind of funding/grant, does it have a name? Any info would be really appreciated.

From my little experience and from what everyone is saying, the major problems appear to be access to information and lack of consistency in the type and quality of service. Can I just say thanks to you all again, you're definitely helping on the info front, and you're also preparing us for what to expect on the deliver side.

Thanks,
Jemmm

Ah - I used to live in York!

Not really Saintly. I've done a number of PECS courses and been on their conference, but don't get much chance to put it into practice these days -because ds1 can just use it- , so it would be really interesting and rewarding to start at the beginning with someone again.

Hi Jemm

I am in harrogate, have a DS who is 5, with speech and language impairment/ possible autism (we have to wait till Oct to find out)
Have just recently gone through all the assesments at Harrogate CDC, so am here if you need any advice, want to know what to expect etc, and a shoulder!
I will keep watching this thread, I dont have PM so email me as soon as so I can delete it :-)

[email protected]

speak to you soon!

helen(underscore)g(underscore)[email protected]

Just reading your comments about the SALT, v interesting, prob the same SALT as we have.... and we have had the same issues, we ended up hiring a private Speech Therapist... have details give me a shout.

AM reading bits more of your thread as I'm at work....

but re: contact- there was a health visitor co-ordinator, who coordinated all the appts etc and was there for advice, but her contract finished at the beginning of april, and she went back to being a normal HV... so not sure what happens now... we are in the dark too...

ds had v. bad reflux. and imbalanced. Increasingly delayed in the milestones. v. late walking, now has pierdo and walking much improved, goes to gym and think that is helping. Started getting assessments, at 27m when SALT suggested paed and physio. i was concerned at 24m, falling really behind his peers. but it was not till almost 3y that a real change took place, when he finally seem to show understanding, talking only took off at 2y9m. i only say, as they kept telling me his so young, which is agonising at the time, but also v., true. he is such a different boy from a year ago, and could not have imagined that progress that has taken place, so you never know. he is a v. happy chap and i am so proud of him.

but getting support is a v. trying task, only got portage as directly asked and hassled people.

The nursery we use is a council nursery in Scotland - they call it a 'day nursery' as opposed to what I don't know as they don't have 'night nurseries' . They offer free places to children under 3 years if there is a need due to family circumstances. It was all arranged through the Health Visitor at the time of DS1's dx. I would contact your HV to find out what the arrangements are in your area.

Hi Novacane - how did you find Harrogate CDC? As for the SALTS - it's difficult - the person I spoke to at NAS said that they are basically thin on the ground, not just in Harrogate due to Maternity, but as a whole nationally.

The HV co-ordinator sounds like just what I'd like - and probably what most people need - just someone at the centre pulling all of the strings - we had someone who was perfect - our HV, but we've had to move HV due to moving GP's - all a bit of a pain to say the least.

Jasdox - thanks! It's good to hear someone is getting somewhere. You are right of course - we're looking at our 23 mnth old, and we still don't know where he may end up - it's very early days. Some questions: do you feel the reflux was linked? What do you feel made the difference? Has he been diagnosed as having Autism?

Cyberseraphim - Scotland - that would be right, you do things a differently there; a little more enlightened/generous. The local NAS rep. did sound a little taken aback when I told her. Still - I will give it a shot. I do think we should all start a lobby group however, much as your "day nursery" makes me envious, a "night nursery" sounds absolutely perfect - pack the little delights off at 7-ish, pick them up the following morning. The rest of it is easy then isn't it.

We should probably do the sleep/autism thing somewhere else, some other time...

Thanks again everyone,

Jemmm

Jasdox - apologies just read earlier post re. portage and diagnosis.

We have been refered - just not had anyone get back to us - part of me is hanging back now given that we have the appt. next week with the paed.

Certainly from experience with SALT, structured regular "play", would really benefit DS - I think we can get portage through our surestart - must look into that one tomorrow - if I can get two lots - all the better!

Jemmm

Just a quickie - mainly for Moondog if the SALT we wish we all had at home is around...

Had a call from SALT this morning asking if she could come tomorrow morning - bit tricky as I'm on my own with all three of them - regardless - I said yes, as it was the only way I'd see her before appt. with the paed.

What questions should I be asking? Bear in mind she has already said that she "thinks he's a very visual child". She virtually jumped on something that I pointed out.

I'm interested in PECS, but worry that it's too early for Ds - he's 23 months - but I've heard of other people having success at this age. We've been trying to sign with him - I just don't feel that he's engaging with this at all - much as I'm happy to perservere, as the other children thinks it's great fun.

I think there's been a slight improvement in his shared attention recently, and I think he's almost edging towards "requesting". Any improvement I would put down directly to "sing song" type activities I've been doing with him. Actually, they all include an element of signing and singing, (that's not a typo. if you see what I mean). Row the boat, wind the bobbin, and the theme music to Something Special, sung and signed - are all huge hits with Ds - his eye contact is as good as it gets and you feel that he's engaging with you, big smiles, some of the actions etc - well mainly rocking to row the boat.

Sorry one last one for everyone while I'm here - anyone been swimming with their Ds with autism - went yesterday, and after a tricky first 5 minutes he really chilled out, I've never seen him enjoy something "calmly", if you see what I mean - it's all throwing and flapping with Ds - again - great eye contact big smiles - lay there with my support floating in the water.

Thanks
Jemmm

Hi, we are in Harrogate and at about the same stage as you except we have seen paed - but not the one everyone else with ASD seems to see. We had 1.5 hour appt with paed and he then deferred decision about multi-disc until SALT had seen DS3 but she only saw him at nursery (where he is at his most withdrawn). We had expected 3 weekly visits for multidisc assessment where they video you playing etc (as this is what other people who have gone through it at Harrogate have had) but have now been told that ed psych will visit us at home and then we will have a meeting where they will give us their decision (ie based on one paed visit when he said he did not know if ASD or not, one nursery visit by SALT and one ed psych visit at home). Someone at recent NAS meeting told us they are diagnosing one child a week at Harrogate CDC with ASD. Not sure whether diagnosis is just obvious in our case, or whether its the ed psych's call anyway (which is what another couple had told us that he basically makes the decision for the paed and is the crucial assessment) or whether they are cutting back on the assessment procedure as we certainly seem to be getting a shortened version. We have found that we have been cast adrift since SALT saw DS 2 weeks ago. Our appointment when we get the decision is not until July and basically we just have to sit and wait. We had hoped we might start SALT as his speech has regressed and that clearly needs addressing whatever the "decision" turns out to be, but nothing has been said. My boy is 2 1/2 and would be happy to get in touch if you live locally? You can go to the SALT drop-ins which take place every week in and around Harrogate, I did this and it meant we got a SALT referral and hearing test referral so this was in the pipeline before we got to see the paed, otherwise we would have been waiting longer. Otherwise we haven't found any local support other than NAS, I have been to 2 local meetings so look out for me if you go. Leeds library do autism info sessions monthly apparently, there also seems to be an active group in Wharfedale (AWARE). We asked about Portage and education advice but were told all this will happen after "decision" so basically it sounds like nothing will kick in until July, when no doubt they will all go on holiday. However on the bright side I have heard good things about the quality of the speech therapy around here from Mums up at school.