Aspergers/ASD support thread

Cazzywazzywoo

As I mentioned before I think you are right to be concerned and chasing up these concerns -however don't beat yourself up about it -a few days in the scheme of things won't make a difference.
Remember you are doing the best you can -you can do no more.

If it will make you feel better then try and see the GP, but in reality a few days will make little difference. It is more about going to the person who you think will speed you through the referral process.

Also -you can self refer to an educational psychologist (at least you could a few years ago). You could ring your ed psych dept (mine is at County Hall) and see if you can get a detailled assessment completed.

Does your child show any level of imaginative play? -this can be difficult to spot -I mean real 'imagination' such as pretending to have tea parties with toys etc. Running cars repeatitively up and down the same path is not imaginative, it is repetitive. This is always an indicator. But I always think it is the non pointing and non waving that is the best indicator -as these are both social interaction gestures and some very young babies will wave (I mentioned my 12year old still cannot wave -he just doesn't see the point in saying goodbye as it is a social thing).

I hope this helps -with autism you rarely find a child who ticks all of the boxes!
Please try not to worry too much (easier said than done I know!). You are doing a great job and with you fighting his corner he will be ok!
Take care
Cazzy

notakid

I've a son with autism and wouldn't tick many of these boxes. Please don't worry he is very young. You are having a meeting it probably won't get any answers straight away but you raising concerns which is good.

Rebekka_2

I knew from a very early age my youngest was different, from birth really i know that sounds daft but i did, by the time he got to three i was at the end of my tether, was his obsessions, his repetitive behaviour, etc,etc. At 3 and a half he was assessed and they immediately picked up on meeting him all his "little ways" (this is what i have come to call them) anyway after a long assessment they kindly told me all the answers to the questions i knew and nothing to those i didnt, they told me they didnt want to label him (fine with me) and either it was something that he would grow out of over the next few years or something we would learn to deal with, end of assessment:rolleyes: In the year that has followed i have not received one phone call from a doctor, HV or nothing so i now dont get stressed with his little ways just try and deal with them in the best way i can, my main concern is and was that he may struggle at school with his "little ways" but i suppose only time will tell and i am right on the ball so hopefully i will be able to pick up on it immediatley.

But a little story, my son has never really been a GP visitor, except for the odd cold and popped him to the gp a few weeks ago as he had a bad leg in a morning (think he had strained it and it was weak first thing in a morning) who could find nothing wrong, he was a trainee doctor so popped off to check he hadnt missed anything with another GP and came back and said i have spoke to Dr XXXXX who knows your son well (seen him twice in 4 years) and feels it maybe to do with his behaviour problems, i was fuming and asked what behaviour problems they where then? He of course couldnt answer, but my ex was proved right who was fuming that i had had ds assesssed as once labelled he would never get anywhere, my son hadnt even been labelled and the above happened

clairefun

My son was 2 in August and never had a check. In fact he only ever had a 6 month check. Mind you, I was never even offered (or had) a 6 week check, so I think it's just a bit (lot) rubbish around here. Everyone's so busy with the speciasl things put on for the minority groups and the teenage mums, that they ignore the 27 year old first time mums who are equally ignorant of what to do...

Just wanted to mention / gripe a bit - thank you.

Nicki

Me again, Dummie.

I know that you are feeling panicked at the minute, and want a clear cut answer, but I think you need to try to slow yourself down a bit here, and prepare yourself for the fact that you may not get an answer immediately, even if you were to see a specialist tomorrow. Autism isn't something that can be diagnosed in a five minute appointment -your child is likely to be seen by a number of different specialisms who will then pool their views and come to a decision. This will take time.

My experience was that once the HV and GP were convinced that there may be a problem, we were seen very quickly on the NHS, and the time from first concerns being raised to final diagnosis was about 6 weeks. However, others in different parts of the country have had very different experiences and have sat on waiting lists for an assessment for much longer. A lot depends on what the GP and HV say in the referral letter I think. If they express strong concerns your child will be seen quicker, and if they suggest it is the product of an over-anxious mum, you may have to wait longer. Funnily enough though the PND may work to your advantage, as they also prioritise cases where parents are considered not to be coping.

We did see a private paediatician before the NHS assessment, but to be honest he had no particular expertise in autism, and didn't even suggest it as a possibility, although he did refer her to a private speech therapist. At the time this paediatrician appointment cost about £250, but it was money wasted as he didn't spot the problem.

If you do want to see someone privately, then you should ask your GP to refer you privately to someone who specialises in autistic spectrum disorders. He will be able to research the best person in your area for you (who will probably also have an NHS practice in your area). You need to check what will happen if you get a private diagnosis though. Will that then entitle you to NHS SLT or will you still have to wait for an NHS assessment before that can start. Private SLT costs between £60 and £100 per hour, and your child will probably need weekly sessions so the costs will mount up very quickly if you are having to do this privately. These costs will almost certainly not be covered by PMI if you have it, though the initial assessment by the paediatrician would. If you can't afford private SLT and the NHS will make you wait until after they have done their own assessment before providing it, then you have to ask yourself whether it is worth getting the formal diagnosis early.

In your shoes I would phone and make a routine appointment with your GP for after your meeting with the teacher. Don't try to make an emergency appointment to be seen earlier, for two reasons. First, emergency appointments are meant for things which are time critical. This isn't and you will alienate your doctor before you even start talking if you have taken an appointment for this reason. Second, emergency appointments are usually much shorter than routine appointments, so your doctor will be under even more time pressure than usual, and you won't get time to outline all your concerns, especially if you think you might get upset and find it difficult to express yourself.

Try and do something nice for yourself today while your son is at nursery to take your mind off things, and go to the meeting at nursery tomorrow and see what they have to say.

Thinking of you.
Nicki

Dummie_2

As usual I've acted on impulse again. I get myself in so much trouble like this. I just panic, see no reason and jump.

Called the surgery first thing in the morning and made an appt. for today. Just came back. Saw a Dr I've never seen before. A lady who was quite young. She was ever so nice. Sat and listened to me until I had finished without interupting. I mentioned all my concerns. I mentioned that nursery was having concerns too. I also printed out information from the NAS website to show her.

She then asked me loads of questions about DS's development. This is quite unusual. Most doctors seem to come to a conclusion about the problem before you've even finished talking.

Anyway, she's referring DS for a hearing test. She said that this will be the first step and we have to rule out any hearing problems before we go any further. She said if the hearing test came back OK she'll then refer him to a paedaitrician. I'm quite happy with this suggestion and am so relieved that at least someone is listening to me and taking my concerns seriously.

When we were in the waiting room our HV arrived for work. I was like, 'don't look this way, don't see us'. Anyway, she saw us. Came over and asked why we were there so I told her we were seeing the Dr re the issue I discussed with her last week. She didn't seem too pleased but I don't care!

jellyhead

it's worrying and stressful when you think your baby needs help, especially when you know that early intervention makes such a difference. it's only natural for you to panic *HUGS*

when i read your list i actually thought my ten year old must be autistic, but the paediatrician didn't want to label him even though he must have ticked every box (i don't totally bow to his judgement though, i'm positive that my boy is dyspraxic) . also, my 16 month old baby seems to need immediate assessment according to the last bit, but there's really nothing wrong with him (until he gets his 2 year check i suppose, maybe he'll be talking by then).

so the lists are helpful but not essential. your boy is still quite young and might improve soon. i noticed massive improvement in my boy at around his 3rd birthday. in a 6 month period he must have progressed from being 18 months delayed to being almost okay (social and fine motor skills still poor) and was statemented to go to mainstream nursery - until that point nobody ever imagined he could go mainstream.

you're on the right track, i don't think anybody would make a diagnosis until the hearing tests etc. is dealt with anyhow.

i know it seems like yours is the only 'different' child but once at school it might just seem like individual quirks. my son makes friends with boys who seem autistic but aren't, if that makes sense. there are a few of them.

notakid

I think Nikkis post is spot on.
My son saw one of the top specialists in autism at the age of seven. He said it could be autism but he didn't want to commit as children mature at different ages. He was given the label at the age of 10.
It really will depend on how autistic the child is, even the professionals do not like to label.
The great thing is that you are aware and are raising concerns which mean your child will not be overlooked.
My son is wonderful. I used to say to him I wouldn't change him autism and all but I really didn't mean it as I saw the condition as limiting. He is 14 now and is the kindest most thoughtful child ever, very truthful and fair. He has his odd obsessions but I can truthfully say I wouldn't take the autism away if I could because it makes him what he is.

Savvy_Sue

I only caught snippets of Am I Normal on Radio 4 this evening, but it's repeated tomorrow (Wednesday) at 4.30 pm, or you can listen again. This week they were dealing with Autism and Asperger's Syndrome. The bits I caught had some older children / young adults on, talking about their experience. You might find it reassuring to hear that one's working in a bank.

I've heard bits of previous programmes and they've been very interesting and informative.

Of course, to those on the Autistic Spectrum, they are perfectly normal, it's the rest of us who aren't ...

fsdss

Dummie wrote:

She then asked me loads of questions about DS's development. This is quite unusual. Most doctors seem to come to a conclusion about the problem before you've even finished talking.

Anyway, she's referring DS for a hearing test. She said that this will be the first step and we have to rule out any hearing problems before we go any further. She said if the hearing test came back OK she'll then refer him to a paedaitrician. I'm quite happy with this suggestion and am so relieved that at least someone is listening to me and taking my concerns seriously.

dummie

i'm glad you saw a gp who appears to be on the ball. what will happen is that your child will attend a hearing test- if he fails he will be referred to a paediatrician for further investigation

if he passes then he will also be referred for assessment (possibly via a speech and language therapist so that they can rule out a communication prob). so your son will be assessed in both circumstances

in my area the waiting list are around 6 weeks for hearing and 6 months for speech and language, however if the gp prioritises this it could go through much quicker.

social problems of children can be associated with a number of problems (such as influence of mothers post natal depression, disability such as hearing impairments, speech difficulties, how they are treated at home etc) obviously i'm not suggesting that any of these are answers for your sons circumstances. however a child CAN display behaviour which are linked to the above reasons but which ALSO tick the boxes for autism. only a thorough examination will answer some of your concerns, and you are now on your way to finding out

good luck and i hope you get the answers that you are searching for.

on another note HV's 2 year checks depend on the health authority that the HV's serve, in my office building i work with 9 HV's in one building, all from different practices and over 2 Health authorities i asked them all today whats the score with 2 year checks - , only 2 HV's do 2 year checks on all children in their caseload and 4 target children. the other 3 rely on parents to request a 2 year check.