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

Hi Jemmm,

Welcome!

Not till age seven? Blimey! Nope, it's quite possible to diagnose from birth if they use the right scanners these days, but those are hugely rare and expensive. I personally think age 7 is far too late.

Yes, the earlier we start thinking about how to understand the world, the easier it is for those of us with an ASD. A good programme of help and support is great for all of us throughout our lives, and I think it is easier to get support of the right kind with a proper diagnosis.

How to solve your problem, though? Not sure. I'd be wondering about asking the local autism charities for their advice on how to get round this problem - they may know the shortcuts. Or a private diagnosis if you can afford one.

There'll be others with better info about the diagnostic stuff for children in your area...

What sort of things are making them think it's autism? I'd love to hear more about your ds

It may be that your area doesn't diagnose until older, but still allow you access to services and therapies before diagnosis. I think this is the key thing rather than a diagnosis to be honest. If not, and your local trust is being slow, then perhaps a private diagnosis is the way forward.

Good luck.

7!!! That is worse than where I live.
I have got to say it does take a good while. Years is probably an exaggeration. Autism is not something that can be tested by an x ray or blood test.
My OT and speech therapist treat my 2.10 son as if he has autism with out the peads dx as yet. Somethings need a dx but not the essentials.
It may well be that think have been exaggerated in the gossip chain, Aspergers does take longer to dx though so someone may have gotten confused.

I was told it could take years to diagnose Aspergers in my DS when he was referred at age 4 to the paed. As it was we got an autism diagnosis within 6 months. If the traits are clear then a diagnosis can be made. ( I still feel about this as his preschool always claimed he was absolutely fine).

However I agree that it is more about meeting your DS's needs than getting a diagnosis. Easily said as I know I couldn't rest until the diagnosis was given, even though we already had a statement for school.

I took a list of concerns based on the triad of imapirments to our first appointment. Our paed said this was extremely useful and unofficially told us she didn't need any convincing to assess for an ASD diagnosis.

@all - thanks everyone for the warm welcome and advice - it's just what we needed - kind words from people who know where we're at.

@amber ds has zero language right now - and very little communication of any sort - no pointing/pulling or intentional communication of any kind, he flaps his hands when he's excited, tenses hard at certain points and has a number of repetitive behaviours - throwing balls up and down a room, spinning things; wheels, plates. He's reached all of his developmental stages very late, he's still very imbalanced. He has no imaginative play at all. His sleep his dreadful. He has difficulty maintaining eye contact and has very little receptive language.

This all sounds massively negative doesn't it - he is also the happiest, smiliest little boy, full of energy and full of fun - which kind of threw us off the scent for a while. He had terrible reflux and we put his developmental delays down to that; down to the fact that he was a boy, and down to the fact that we were comparing him with his twin sister.

I think you're right about trying to make local contacts - that's our next step!

@catski - yes - absolutely - at the end of the day - as long as we know there's a problem and we're dealing with it as best we can, and as long as the lack of a diagnosis, doesn't impact upon the services that we can draw on then for now - hey who cares what we call "it"?!

@jjones - the "years" was coming from the HV, and to a lesser extent the SALT - I was picking up a bit of a vibe too - I maybe being paranoid - the "not until their 7", was from someone who I'm not convinced I trust - however, it scared the wits out of us - we've heard from many different sources that the relationships with health professionals is a "battle" - I feel a little like I'm arguing with the consultant before we've met him, which I'm not sure is a good idea!

@widemouthfrog - both the HV and SALT, were "convinced" within minutes of seeing ds. We are already getting intervention - SALT onboard, portage on it's way, audiology test booked in, meeting with paeds set up - this is all within weeks of concerns being expressed.

Interestingly, we've already started putting together a "history". We're vaguely concerned this looks confrontational - but the number of times you have these kinds of appt. and forget something - it's simply not worth the risk.

Hey, thanks again everyone - all advice/comments are really appreciated. Sometimes, you just need someone to rant at! Thanks.

J+E

If he has no language, then puting in an appropriate system to express his needs and wants is paramount asap, irrespective of the time it will take to go thorugh diagnositc procedure.

I recommend PECS (I'm a salt in this field.
Your salt should be able to help you with this.

7 does seem late. It may be that the doctor wants to adopt a wait and see policy, but you and they need to make sure your ds is getting the help he needs in the meantime.

Hi, welcome

"early diagnosis and intervention leads to significantly better outcomes"

I think what this really means is "Tuned-in parents and teachers lead to significantly better outcomes".

And the assessments, diagnoses and programme are ways to tune in (sometimes).

Yes Lingle, assessments and diagnoses mean nothing unless things are actually done and issues of concern address. A lot of professionals seem to forget about that.

It took a 6 week assessment to diagnose my 2 year in 2002.

Agree about PECS. 2 day workshop excellent if you can get one. And do check there isn't anything local. Here they now have a very good early intervention scheme for children who will probably go onto access diagnosis (diagnosis not being a requirement because of the length of time it can take). Pros don't always remember to tell parents about it though!

Hi, sounds like I'm a year and a half ahead of you with a similar boy!

I think that you do need to buckle yourself in and prepare yourself for a diary FULL of appointments and a couple of big folders to keep all his appointments and reports and so on.......

Whether or not he does turn out to be on the ASD the approach would be the same for a late talker. That's what I have deduced anyway. I'm not 100% sure I agree with the dx my son received (at 3) but the more I look into it online, the more it seems that he's a visual learner and that the treatment/teaching approach would be the same anyway.

So don't get too worried about an exact diagnosis. If he's not talking, get a MASSIVE picture dictionary "my first 1001 words read, look and learn" peter haddock publishing is quite good and wasn't horribly expensive.

Personally, as a parent not a SALT I think it's incredibly difficult to use the Hannen course or signing or PECs with a 2 yr old boy who MAY be on the ASD. I found my son hadn't the concentration or the inclination to take on board any of the methods of communication I was pushing on him.

If I could go back in time, I'd have just started looking through picture dictionaries for at least 20 minutes a day (in chunks).

Did you do the PECS course Margot? I found it impossible to implement until I'd done the 2 day workshop myself. DS1 refused to look at any books after ds2 was born so we needed something which assumed no attentional skills.
We did waste some time trying Makaton, - waste of time because he couldn't imitate eg do this - nothing - so signing was meaningless. He has started to use some signs since learning to imitate when he was 7 though.

ps if your son has 'no language' at 5 then it's unlikely to be Asperger syndrome. It sounds more like "classic autism".

My son is the same, very affectionate with the family, and can fight his corner quite well with his sibling... but he has no interest in my friend's children. If they were replaced by different children he'd hardly notice. At nursery he hangs back (maybe ONLY because he can't talk??) but he definitely likes other children being around, so like you I think I was thrown off the scent as you say.

Saintlydamemrsturnip, I haven't done the PECs course, no. I feel a bit crap. we failed at Lámb to which is like the Irish version of Makaton, it is just a babyish version of ISL. But I'd be making the signs for "milk?" or "juice?" and he'd have his head INSIDED the fridge, ignoring me!!!

I am not stupid and yet I have failed at everything the SALT has put before us. A 2 day workshop wasn't even mentioned to me. They haven't the resources here in Ireland and I don't have insurance as I'm a broke single mother!!

oh mrsmargot that sounds hard. Does your son imitate? Honestly the first SALT we had was lovely, but very inexperienced, she tried to get us going on Makaton (because she wasn't PECS trained) and it was a total waste of time- because ds1 had no imitation skills. These basics (such as looking at imitation) are often completely missed by professionals. Once ds1 mastered imitation then he did start to pick up signs.

PECS again, we tried for ages but it was very hard without support and training. Once we'd got that it clicked for the whole family.

Just had a quick google, but if you look here and scroll down there's a link to PECS in Ireland and something about applying for funding. It would be something well worth trying to get funding for.

It's not you that has failed, it sounds more like the SALT not giving you appropriate tools and support.

Thanks Saintlydame....... (sorry Jemmm, terrible Hi-jack here! I'll buzz off back to my own thread in a moment)..

I'm going to be honest with the SALT when see her and tell her that I have tried with PECs but found it hard.

Are there 2 of you to do phase 1 of the PECS? It's more of less impossible if you're trying to do the early stages without another person.

"Personally, as a parent not a SALT I think it's incredibly difficult to use the Hannen course or signing or PECs with a 2 yr old boy who MAY be on the ASD. I found my son hadn't the concentration or the inclination to take on board any of the methods of communication I was pushing on him.
'

I agree with this - PECs was a complete failure for DS1 at 2.6 although he knew loads of Picture Book Words (receptively and could point to them). Hanen was good and ideally would have done it at 3.6 not 4.6 but would have struggled with the ideas at 2.6. ASD children are by definition slow developers.

Also agree with MrsT - It annoys when the child is labelled a failure not the means of teaching and support.

ALso I know many do use Makaton with ASD children but DS1 would still struggle to understand waving though he can say 'hello, bye bye' appropriately now. No one but the parent can know how the child best communicates but I agree it is hard when a professional sweeps in pretending to know it all.

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

think there might be a missing pronoun there - hard to type with failures asking for crisps all the time

we are currently undergoing a dx, been in the system a year, and net meeting - oct! but ds has progressed hugely in the last 6-8ms (nearly 31/2). i feel his made the most progress recently with the help of portage. she comes once every 2 weeks and spends an hour working with ds, playing games involving - colours, shapes, threading, jigsaws etc. ds`loves this time and the positive activities i think are taking effect generally. she uses sign language and pecs and has given us pecs, which since she started ds now knows how to use them. cannot recommend portage enough.

Yes cyber - we need to have a thread about this whole "medical model" of autism thing.... (I promise I have actually done a bit of real work this morning...)

"she tried to get us going on Makaton (because she wasn't PECS trained)"

This seems to happen all the time - someone will recommend what they know about rather than assessing the child's needs. Professionals do look more at the label than the child. I have been advised about all sorts of problems DS1 does not even have but they are problems the professional has read about ( probably in Take A Break or Woman's Realm!)

yes yes yes yes yes yes yes yes yes yes yes yes yes Cyber.

This crystallised for me last week with the paed.
At one point she was a bit bothered about me declining to enter the diagostic process and said "you're a lawyer, you appreciate that I have a duty to give it to you straight and to advise you of the risks".

The penny dropped. She's a professional just like me. With all the strengths and weaknesses - the need to protect against malpractice suits, the need to record that you advised on the worst case scenarios, the tendency to give lots of advice on what you understand and be as negative as possible on the bits you don't know much about so you're safe (usually competition law in my case!) the need to be respected, the tendency to advise some abstract "best practice" that may not bear relation to what parents and teachers are doing on a day to day basis, the years and years of experience you need before you realise that really successful clients are listening to your advice but not necessarily acting according to your professional "good customer" agenda.

I could go on.........

TBH though cyber I think a lot of that just highlights lack of training or experience. Especially with the severe end of the autistic spectrum- where everyone thinks rocking and headbanging.

The poor SALT who advised us to use Makaton, couldn't offer anything else because she hadn't been trained in anything else. Other NHS SALTS have very little hands on experience so when they find 'feed the monster' or something doesn;t work they don't have anything else to offer. It argues the case for specialist SALTS who are properly trained, but who also have the time to work 1:1 with kids and increase their skills. Our NHS specialist SALT was stumped by ds1 and said 'I can't do anything with him because he isn't interested in anything'. She was just out of her depth. Private SALT had no problems with him (because she had hands on experience coming out of her ears and had worked in an ASD school).