Going to Communication Clinic next week

[beccaboo]

We're going to the Communication Clinic next week, and I'm feeling really scared about it. We've had an initial opinion from a private paed already, but this is a two-hour assessment with the NHS paed and speech therapist, and may result in a definite diagnosis.

Anyone who's done this, what's likely to happen at the assessment? Will they be testing DS (age 3) or mainly talking to us? The paed and the SALT have both visited the nursery to observe him, and the nursery are sending them a report too.

I'm really in two minds about whether we want a diagnosis now. He's made so much progress in the last six months that I'm not as concerned as I was. Can we say to the paed that if there's any doubt then we'd rather wait and have him reassessed in a few months/a years time? Or do parents not have much say over whether they give a diagnosis or not?

I know nothing about this, i'm afraid, but out of interest what were your concerns?

Oops! Yes, I should have said what they're looking at shouldn't I? He has a suspected ASD. His language was delayed, not talking at all at 2 but has just turned 3 and talks in sentences now. SALT tested his receptive language recently and it's at the right level for his age. His concentration/attention isn't great, his eye contact isn't brilliant but is improving. He is fine around other children but isn't always sure how to interact with them. He seems bright and nursery say he's doing well. He had little imaginative play six months ago, but it has improved loads recently.

So I guess whatever problems he has are relatively mild, at this stage anyway. That's why I'm wondering about whether it's a good idea to get a 'label' at the moment. We want him to get as much input as possible, but he's already getting SALT and some extra help at nursery, so what else would we gain from a dx? The paed mentioned Aspergers to me a while ago, but isn't 3 extremely young to be given that as a diagnosis?

I would've thought that you would be able to ask the Paed to re-assess him at a later date if you wanted to. It may well be that they will decided that he doesn't have an ASD anyway.

The thing to be aware of is that if it's decided that he doesn't have any problems then the extra help and SALT that you are getting at the moment will stop. A common mistake that some authorities make is to say "X seems to be doing really well now. I think it's time we reduced/stopped his/her support in school/pre-school." What they don't realise is that this extra support is exactly why X is doing so well.

3 is quite young for a dx of AS but some Paeds use AS and HFA (high-functioning autism) interchangeably. We were told that ds1 (then 3.5yrs) had AS but the actual written report said he had HFA.

Also bear in mind that if your ds still has some problems then he may find the transition to school difficult. Reception is a lot like pre-school in the sense that the emphasis is on learning through play. Yr1 is a lot more formal and this is where the problems often start. Ds1 is in Reception and hasn't needed a statement. This may change for Yr1.

I haven't been to a communication Clinic before but I would imagine that it will involve asking you questions about ds's development/early history while they also watch ds. They may also have some activities for him to do and games for him to play.

Beccaboo - your ds sounds like my dd at that age. The improvement she made between the ages of 2.5 - 3.5 with her language was amazing. Now her language is very good but she still struggles with understanding.
I know it's scary as I felt like that too and still do sometimes. I really think you should go for the appointment as even if you don't want to know I am sure your ds's difficulties will be picked up at school anyway.
My dd still doesn't have any dx other than speech and language disorder but I think she has some kind of overlap onto the spectrum.
Just think you have come this far with the SALT and paed. visiting the school, this is just looking at what they have found.
Please CAT me if you need to talk more Blossomhill
BTW My dd would never have had all of the help and made the progress she has without the support of all of the professioanls we have seen

Hi Beccaboo. I think I understand why you are almost reluctant to get a diagnosis but I think for the reasons coppertop points out that it it probably better to go and see what they say.

Even if they do give you a diagnosis of HFA or Aspergers then it doesn't have to pigeon-hole him. It could just be used when you need to get him help. One of the mums I know in the US whose daughter has the same condition as mine said that she didn't tell ANYONE her dd's diagnosis, not even her teacher. She didn't want anyone to have assumptions about what her daughter could do.

I guess what I am saying is the old cliche that a diagnosis is just a label. But you don't have to use it, unless you want to.

beccaboo I really agree with coppertop and blossomhill have said.

My DS1 has come on in leaps and bounds in the two years since he got his diagnosis of HFA (he's 5 and a half now) and I am actually feeling like a fraud posting on this board these days as I find it quite hard to see him as having "special needs" any more. However it is definitely the case that for us, having a diagnosis made it much easier to be taken seriously and to set up the systems etc. that have helped him, especially with the transition to school. So I wouldn't worry too much about whether he gets a diagnosis of HFA/AS now - after all, you could always go back and ask for a second opinion in the future (which I am seriously considering doing with DS1 if he continues to do so well).

Agree with everyone that has posted.

You could have him reassessed a year befor school entry so that if there are still any difficulties they can be addressed.

Hopefully the SALT and Paed will know the system well in your area and will be able to give advice about whether a diagnosis is appropiate for ds.

Good luck

I agree with you dinosaur in that dd's special needs are now fairly mild to how they were 2 years ago. Some days I think maybe there isn't anything and then she has a quirky half an hour and I think mmmmm!
I mean my dd can do everything that other children can but still finds communicating appropriately difficult and thanks to the help and support and her unit placement this is improving.
We are off to Bibic on the 30th March and I said to the lady there that I was scared of what they were going to tell me. She answered it's nothing to be scared of as it nothing you don't know anyway!

Beccaboo,
My son's delayed speech was detected at age 2yrs 7 months. We had regular SALT input until he reached 3yrs and 9 months and his SALT left. No further SALT was appointed until he reached 5 and 8 months.
During this period we had no help and his transition from nursery into school was a nightmare.
By the time he was in year 2 he had very little vocab and was assessed by an EP who set the ball rolling with assessments to discover what his problems were.
When J was a toddler the Paed told us to sit back and see how things panned out and that the health authorities policy was not to dx until the child was over 7....now J is nearly 9 and the policy is to concentrate on the Early Bird scheme and dx at a younger age. J is stuck in limbo waiting for his assessment and DX.
IMO I think you should just attend the appointment with an open mind and take what support is offered to your little one. Early intervention is the best thing going....just wish J had been given the oppurtunity when he was a toddler.
Good luck...thinking of you.

Go beccaboo.
These sorts of appointments are very rare. it will give you a chance to ask lots of questions and get a very detailed report.
If you cancel, the chance may not come again for a long time.
Even if a dx is made that you disagree with, you're perfectly within your rights to reject it.

This field is still pretty new. Noone has all the answers, but when professionals and parents are able to work together and exchange ideas, opinions and feelings, we are getting there.
Good luck .

I wouldn't necessarily rely on the professionals to give you all the information you need. Ask if there is a local parents' group, it doesn't need to be related to any specific dx, we have one here that is for parents in this borough who have children with difficulty/disability/SN etc. Parents are the best source of honest and up-to-date info on the local scene. Not that profs can't or won't help necessarily, its just different from a parents' pov.

Thanks everyone for all your advice. I wasn't really thinking of cancelling - the waiting list here is over a year, and we've fought hard to go to the clinic asap - it's just that thing of banging your head against a brick wall and when it finally gives way, wondering why you wanted to be on the other side in the first place!

I didn't know we had the right to reject a diagnosis, that makes me more confident. It's not that I don't want to know what his difficulties are, of course I do - because that means we can help him. I think it's the 'label' thing I'm wary of - but you have all reassured me that this doesn't have to be a problem. It's more than 18 months until he starts school, so this gives us some time to work out the best way forward.

Thanks again, I'll let you know how we get on.

Good luck!!

Come to this a bit late but just want to say that the 'label' has helped us and in fact I wish we'd got ds assessed earlier as the help would have come in quicker. Good luck at the clinic.

dinosaur - glad to hear that your ds is doing so well Not the same here I am afraid although no worse thankfully.

Hello again, we went to the clinic this afternoon. We now have their opinion - ds has an ASD. Feeling a bit down about it - he has made such great progress over the last six months we were hoping they might say he no longer fits the diagnostic criteria - eg. his imaginative play has really developed. However they say they are certain that he's on the spectrum. They have given us the choice of whether we have it put in writing or not....we are going to take a breather, and let them know at the follow-up meeting in six weeks time what we want to do. We won't lose any of his services through lack of diagnosis - the only things we'll miss out on are the NAS Early Bird course and the local authority support person visiting us.

I'm a bit confused about what they said. They don't think he has a learning disability - he is bright and picks things up easily. However they say HFA is not the right diagnosis, because he still has some language problems. In formal tests his scores are age appropriate, but they think he still has some issues - eg. learning some language in chunks. They say it could become HFA if his language catches up. What does this mean? If this is the case, what would be the difference between HFA and Aspergers?

When I asked the paed what she thought the prognosis might be, she said she was prepared to go out on a limb and say she's virtually certain he will go to mainstream school and go on to live independently. This is why I find the diagnosis a bit confusing!

Any thoughts appreciated.

Hi Beccaboo
Sorry to hear you are a bit down. It's not surprising though as it can come as a bit of a shock. We don't have an official dx for dd yet but I am sure it is somewhere on the spectrum. Did they mention Semantic Pragmatic language disorder as I think that's what my dd has. It is on the spectrum but very borderline as a lot of the children that have it have very mild autistic features.
If you want to know anymore let me know

I'm not surprised you are feeling low as something like that is bound to be a shock however much you expect it IYKWIM. I hope you are feeling better soon. Did you feel that they got a good picture of what he is really like at the clinic?

Sorry to hear you've had such a shock, Beccaboo. Even if it's something you're expecting it's still not nice.

I think I mentioned in an earlier post somewhere that our Paed thinks of AS and HFA as being the same thing so I'm not much help with the difference between the two.

My ds1 is at a mainstream school and is doing well with little support atm. The school has funding for an extra assistant who is in the classroom for a couple of hours a day. Ds1 doesn't need 1:1 help with general classwork. The assistant is there to help him with things like imaginative play and social skills. For the rest of the day he does pretty much what the rest of the class do.

He's still only 4yrs old so obviously there is a long way to go until he reaches adulthood but I'm feeling fairly confident that he will be able to have an independent life. He still needs to be taught the stuff that comes naturally to other children, eg social skills, social rules etc but he picks these things up at an incredible speed. In just 2 years he's gone from being the boy who walked in circles to the boy that even professionals have mistaken for NT when visiting his classroom. He is still autistic. I don't doubt his dx for a single second. However, it is no longer something that is obvious.

Thanks everyone. Feeling a bit better now it's sunk in a bit. It wasn't a shock exactly, as we've known for months what they suspected, but we'd allowed ourselves to get our hopes up a bit too much I think.

I think they did have a fair idea of what he's really like, but that was more because it was his regular speech therapist who knows him, plus the paediatrician, who had been into his nursery to observe him a couple of months ago. She said she would feel a lot less confident about her diagnosis if she hadn't done that - she felt that in the nursery environment it was quite noticeable that his behaviour was different to the other children.

That's funny Blossomhill, because we mentioned SPD to them a while ago, but they said they don't give that as a diagnosis any more - they seem to give the label ASD which covers any dx on the spectrum as far as I can make out.

Coppertop, that's really interesting what you say about your ds, and great to hear that he's gettng on so well. He sounds similar to my ds - the social skills/rules is where his main problems are at the moment, but he also seems to pick things up quite quickly. When you say he is still autistic - how does that show itself? What problems does it give him day to day?

Hi beccaboo - it is bound to be a bit gut-wrenching even if you kind of knew IYSWIM.

Sorry, don't know enough about ASD to know about the difference a particular diagnosis would make.

But hugs to you (((((( ))))))).

Ds1 still needs to know exactly what is going to be happening next. School days are fine as they have the same routine every day and so he knows exactly what is expected of him. The school holidays can be a nightmare as sometimes plans have to be changed at the last minute and ds1 can find this upsetting. We use visual timetables (a strip of picture symbols and words to represent each activity) and this has helped a great deal. Ds1 still has sensory problems which can make it hard for him to tolerate noisy and bright places.

There are times when we can almost forget about ds1's autism as he is now fairly easy-going and always smiling or giggling at something. These periods can last for weeks or even months at a time. It's usually during the holidays that we are reminded of his problems. At Christmas he was very jittery and prone to sudden rages. This was something we hadn't seen for a long time.

Our latest problem was inadvertently caused by ds1's school. They thought it was a good idea to explain to the children about all the children who had lost their homes in the tsunami. Ds1 took this very literally and was convinced that our house was one of those washed away. His teacher is lovely and did everything she could to reassure ds1 that the Head had been talking about somewhere else but the nightmares are still continuing. Ds1 still asks several times a day if the sea is coming to wash us away. We seem to be getting past the worst of it but it's another reminder for us that he needs things to be explained to him very carefully so that he doesn't get the wrong idea.