Anyone else interested in a support thread for those of us waiting for a diagnosis?

[BumptiousandBustly]

I have not been on this board long, so I hope I am not stepping on any toes or anything, but there seem to be a few of us out there who suspect that our DC have issues but are enduring long waits for a Diagnosis, so I was wondering if anyone wanted a support thread that we can all vent on?

I will start - DS is 3.10 - and we suspect Aspergers. we saw the pediatrician 3 months ago - for lack of growth and delays in socializing and were told to come back in six months, but we now have a lot more concerns.

On the advice of our health visitor we phoned and asked for an earlier appointment - but were told no - so we have to wait till March to see the pediatrician and hopefully get the process started.

I go between being absolutely convinced he has some kind of ASD and thinking that actually he is fine and I am just thinking that to cover my own bad parenting/lack of control.

Briefly he has issues which include - a bedtime routine that I could tell you word for word (and an identical one with DH even though its never been discussed). He will scream at loud handdryers, he can't cope with anything on TV where anyone is upset/frightened etc. He can't cope unless he has a specific time when TV will start again. He wants a plan for the day - (what will happen and when) from when he wakes up in the morning, he will get very hyper around bed time.

Anyone else want to join me for mutual hand holding, support and sympathy as we wait to hear what the docs think is going on with our DC?

Hi bump! My dd2 is 2.5 like you we flit between thinking all is well then thinking its not. She is having an ados test done soon (no date as yet) for asd. She can be very unpredictable in her behaviour so I'm unsure whether she will manage the test fine or swing the other way and do badly at it. It all depends on what mood she seems to be in !! She also has awful sleep problems and is currently on melatonin to try and help with this

Hi, I have a Ds the same age as yours and I've worried about him from about 15 months. He recently had an assessment but I haven't had the report back from that yet. To be honest I'm not really focused on the diagnosis because I don't think that makes much of a difference to how things are day to day. If we do get a dx we will be well below the radar for any help at school because his issues are mild (well they are at the moment anyway)

The things that really help are spending lots of time with him on the floor playing, diet, exercise and good sleep (easier said than done I know Chundle, but we found the Omega 3 helped a lot with the sleep). A dx can't help you with any of these things.

Good luck!

Hi Bump

We've had a few diagnosis since November (mainly physical) and we're awaiting a referral to CAHMS for suspected ASD. We completed the CAST questionnaire for Asperger's and DS's scores were 'high' and we were informed in December that a result a referral to CAMHS was necessarily in order to establish a 'formal diagnosis' of ASD for DS.

DS is older than your DS but when he was younger hand driers and other sudden noises terrified him; he's OK with these now but his sensory issues have changed and it's more things like crowds cheering and certain songs on TV adverts that distress him (the latter isn't so bad as he just mutes the TV when this happens ). He also can't cope when people are hurt and upset and will often blame himself, thinking that he has somehow caused the hurt (I cut my finger chopping vegetables recently and as he was in the kitchen when it happened, he ran away and hid, crying as he thought he was to blame .

Some days he seems better than others, so like you I lurch from thinking he's actually not that bad, to days where his behaviour has me stressing and frustrated!

So like you I am stuck on the merry-go-round and am more than happy to hold your hand and offer any support and advice that I can!

My DS is 6, btw.

Hi, can I join in? I've been lurking here for a while, but have yet to get stuck in.

I have a non-talking 2.9 yr DS with suspected ASD. We had an epic 9 month wait to see a SALT, during which time we went from thinking he was just a late starter to becoming increasingly more concerned about his behaviour. He's been totally left behind by all my friends children of similar age. The SALT thinks everything is pointing to ADS, and he has been referred to the paed. So we are starting the new year with yet another wait to see another specialist. I fear this is how the rest of 2012 is going to pan out....

Chundle - you are further on than us, we haven't had anything yet - no appointment till March either.

Isabel - I think I was the DX for a few reasons: 1. So that the school have to take any issues seriously, 2. So that he can get any help he needs. but finally I guess I need to know if its just me failing him, or if there is a real issue there.

Flyingfig for your poor DS who thought your cut was his fault. Its also interesting to hear how these issues might change over time. DS can't cope with anyone on TV being upset/cross/scary etc - but so far nothing about specific music/sounds. However he started saying the other day that he didn't like the sound of cars as it was too loud - and I have noticed that in the last couple of weeks he is getting reluctant to leave the house - when we say we are going out he starts begging to stay at home and play "but I like it here mum!" - not sure if thats related or not.

ApplePippa - welcome to the board. I also feel like 2012 is going to be a round of waiting to see people - best of luck with your appointments.

oo yes, I'm not saying the dx is not important, its' really important, but just for us personally I think he is below the radar for a statement so its less of a focus. We have a family history so we are taken pretty seriously on that score.

I am also begining to worry about school - start this year - but I'm trying to tell myself its' a little early for that!

the next appt will be a Camhs one. I don't take DS to that. Now he is more aware I don't want to be talking about these things in front of him.

hi they is a group on facebook called swan come over and join us

DS now gets upset at everything - he has always had a tendency to get a bit wingy - but he is doing it with everything now - and the latest thing is that he starts crying at the thought of leaving the house.

I said we were going to the docs, the post office and the shop and he started crying and said "but thats lots of things!" - or if I say one thing - he will say "but thats boring!" - though he will accept going to the park! - is this ASD or is he just playing up?

I don't know, he sounds a bit stressed. Perhaps he feels a bit overloaded when he goes out, but can't really express this.

We went through a phase of staying in a lot and I think this helped calm him down - alongside a lot of floor time - and now we don't have any issues going out.

Good luck

Hi can I join here too? Pretty stressed out at the moment and not made better by disagreements between me and DH.

Brief story is I have 2.7 year old DS, not talking apart from a few words (never spontaneously), with increasing (seems to me anyway) signs of ASD, including some toe walking, increasing head banging, chewing (although that's a bit better now), obsessions with flicking switches and opening and closing doors. He has been seeing private SALT for 6 months. Some improvement in attention, concentration and interactivity but still not talking. We have now (a few weeks ago) had an initial appointment at the child development clinic (but only with a junior doctor) and due to have blood tests and further appointments.

DH is very much in denial that anything at all may be wrong and is angry with me for "wanting to put a label on him". (He even, embarrassingly, told the doctor at the clinic that he refused to allow DS to have any blood tests, although I have basically overriden this now by saying I am simply going to take him anyway). This had led to recent bad rows. I strongly feel DS does have some level of ASD and so I want to move forward with getting some clarity and then doing something about the situation. Of course I don't want something to be wrong (DH constantly accuses me of this) but I know in my gut that there is. A further difficulty is that I am myself a mental health professional, with a high level of knowledge about ASD in general (although not in children specifically) and DH totally refuses to accept that I may know something about this and may be right. He keeps telling me that there is "nothing wrong with him" and that my insisting there is is a manifestation of my depression (from which I have indeed suffered over the past two years). When I point out that whatever else you say, a child of two and a half who cannot talk at all is not normal, he tell me that putting any faith in the acknowledged developmental milestones is just "British doctors thinking they are clever" (he is from another country).

Sorry about the rather long rant. The waiting for a diagnosis is stressful enough, and the sadness that my sweet baby is not like other little ones his age, and then the ongoing battle with DH just makes it all worse.

PS that all makes my DH sound awful. He is not, he is a lovely man and generally very supportive and loving. This issue is definitely getting to us and driving a wedge however. Anyone else finding this?

Hi,
If it's any consoluation (it probably isn't) my DP sounds exactly like yours.
My DC is almost 3.5 yrs now and he is still saying "she'll catch up", "she's just a little bit slow."
DC can barely talk and has virtually no interest in peers and is often in a world of her own.
We are under Paeds and are starting the process of applying for additional help from the school.
DC starts reception in September aged just 4 yrs and a few days.
Gulp...
I am a nervous wreck over it all.

Hi Alice...I wonder if it always the mother in these situations who is pushing for diagnosis, movement etc, and the father who is saying "oh, he'll be fine" ...
I have spent dozens of hours researching developmental issues, reading the SN threads on Mumsnet, catching up with the latest research on ASD since the time I studied it (years ago)...and DH has no interest in knowing anything about it at all (despite very clearly loving and caring about DS just as much as I do). I wonder if it will change if we actually do get a diagnosis?

I wonder if its also anything to do with the fact it tends to be mothers who are around other children more, and can see the differences. I know I'm generalising here, as there are a lot of SAHDs, but that seems to be how its been with DH and me. I am a SAHM, and have been concerned about DS for a looong time, simply because I can see he is not developing as his peers are. DS spends lots of time with DS, but not usually in the company of other children. For ages he was saying there was nothing wrong with DS, despite the fact he is 2.9 and doesn't talk. But the SALT's report seems to have changed that, and DH (bless him!) has started reading everything he can lay his hands on on ASD.

Hello, so pleased to find this thread as finding support in RL is hard ("Oh he'll be fine", "Oh they all do that")

My DS1 has just turned 4 and like your DS Isabel, his issues are relatively mild, e.g. his language is fine but like BandB I feel like we as a family need to know. DS has huge difficulties with transistions (esp. leaving the house), regular meltdowns over what seems like nothing, food/other rituals, unusual gait, huge problems interacting with his peers (but quite good with adults), bowel problems, lots of sensory stuff- tiptoe walking, hands over ears etc, and a hundred other little things, none of which seem too bad on their own but together make me pretty sure he has AS.

We have our 2nd paed appt at the end of February and I am going to push for a full assessment

Thedudesmummy - yes my DH is definitely more in denial than me - slowly coming round but I think he is finding it very hard to cope with the possibility that our DS might have a lifelong disability. He accepts he may be on the spectrum but that he'll probably get better . Like you, I know much more about it (researcher in developmental psychology) than he does which can be difficult as well for both of us. I'm trying to give him as much time as he needs to come round to it but I agree that we do not need an extra battle with our DHs on top of everything else.

BandB - wondering if he doesn't want to go out because it is a transition rather than it being about going out IYKWIM? If so maybe counting down and a reward for putting on coat and shoes calmly or something like that might work?

I noticed things weren't quite right with DD from around 15 months. I am a SAHM and it was when we started going to toddler groups that the stark contrast between DD and her peers became obvious.
She has never shown any interest in other children and just seemed to even at that age to lack a basic curiosity of other people.
There have been so many subtle and not so subtle signs looking back.

DP tells me all children are different, she's happy so what's the problem?
The problem is she is isolated at nursery, cannot communicate many words and the rarely communicates unless it's the ask for something.
I also get told that I "want something to be wrong with her and am determined to label her as autistic." The truth is I want DD to be as "normal" as the next child but I can no longer bury my head in the sand. She needs help and the sooner the better. I just want to do everything I can to help DD achieve her potential.

My DH is, like yours skidd, probably coming round slowly (almost imperceptably!), a recent holiday including four-hour flight certainly concentrated the mind on how "different" DS is (meltdowns on plane and in airport, needing to constantly be fed cucumbers, his favourite food, a nightmare generally, also DS's obsession with sliding doors leading to his nearly breaking my nose at the place where we were staying!). In practice I think DH does realise that we have to take "special measures" which most other children don't need: like a supply of cucumbers, DVD player with favourite shows available everywhere at all times, getting on the plane last to minimise stress etc etc...but he won't (yet) translate this into an actual admission that something is "wrong"...

Yes alice, that accusation of "wanting something to be wrong" is very difficult. I get a lot of that. My first choice for what I "want" would be a happy "normal child", but failing that, if that is not to be, I want to know what is going on and what I can do about it.

alice I have also been accused of wanting my DS to have autism - it is so upsetting but I try to remember that such comments come from ignorance and fear and we are doing the best for our DC by fighting to get them the support they need. As someone on here (attilla?) always posts, you are your child's best and only advocate

theDudsmummy - cucumbers?! How I wish my DS's favourite food was cucumbers! His diet is so awful.

Has anyone read about or implemented the gluten-free casein-free diet btw?

That's exactly my feelings *theDudesmummy." I am devastated that my child has severe language delay and it is heartbreaking seeing children her own age chatting and playing together whilst DD seems oblivious to them, locked in her own little world BUT I have to face up to it.

DP has agreed to come to appointments with me but it is me making the appointments, asking for referrals.
I used to ask DP constantly "do you think she really will just catch up?" and I wanted to believe him when he said yes. Now I am able to contemplate the fact that she may have a life long disability and do everything I possibly can to help her cope with it.
I have a meeting this afternoon with the nursery SENCO this afternoon to discuss DD and sign for some referrals and part of me can't quite believe that finally after 2 years of being told "she's fine" "she'll talk when she's ready" etc someone is taking me seriously.
Sometimes I've felt like I was a neurotic, paranoid loon!

hi all

we're in the midst of assessment with (hopefully) a dx at the end of it all.

DD is 4.7yrs, and amongst other things, skips everywhere, sniffs random stuff, hits herself, squeals and yelps, shouts out random words in the car, memory like an elephant for a TV programme she watched on holiday in 2009 but cannot remember where she left her coat, dances to the clock ticking, climbs and jumps off anything more than 2" off the floor........none of it is unusual but when it's crammed into the same half an hour you just KNOW something isn't sitting quite right, don't you?

When strangers comment 'oh how i'd love to be my own little world like your DD' it's not a compliment is it?

We have brand new toys lined up in her room - not because she's spoilt and has been bought all the latest gear, but because she really has never been interested in them.

Things have moved pretty fast for us, DH and i went to our GP in October 2011, not coping at all with her behaviour - she was wetting herself at school, metldowns were lasting all weekend, i was crying along with her - DH was getting angry and feeling guilty for not 'doing more', it was a bloody nightmare tbh. GP referred us straight to CAMHS, initial appt was mid Nov, we had an extension to that 2 weeks later, have now had Pearson 'Sensory Profile', Garnet and Attwood rating scale, and development questionnaire to fill in, also have a development questionnaire for school to complete.
We have the name of our consultant who will continue the assessment process, just need to get the forms in from school before we can make the appt.

It's been suggested to apply for DLA, i was pretty dismissive really (benefit bashing threads on MN really don't help) but decided to look up on the NAS site about filling in the forms

It's really made me feel sad that we have a very difficult (at times) little girl.

She's bright, funny (even if she doesn't see it), charming, bouncy, with the biggest smile ever. But she's definitely on some spectrum.

So far has been a bit of a rollercoaster, but the support of some friends, and hugely this section of MN has been invaluable - family are a whole other thread....

Gawd, that turned into a bit of a ramble

Just marking my spot, Ive not got time to post much. My DS is 2.10 and has speech and language delay, tho he has made some really excellent progress in recent months. He is now stringing some word together and now has several useful phases. His single words are now starting to sound clearer but when he strings them together the sounds get mixed up and its hard to interpret what he's saying. His play skills are limited as his concentration span is not good and he flits activities frequently, tho he loves fire engines (and other emergency vehicles) and will happily play and chat about them for ages. His behaviour is awful he has the most explosive tantrums i have every seen, he goes from being happy and smiley to raging monster in seconds.

I also have 2 DDs, DD1 is 9 and was diagnosed with AS when she was 4. With DS i flit between thinking he has SLD and all the frustrations that goes with it to thinking he has ASD. He is VERY different to my DD1 and as much as i try not to compare, its obviously hard not to. I know only to well just how different children on the spectrum are so i really should know better.

He has been referred to DD1's consultant and we have an appointment with her and the 16th. He has also been referred to the social communication clinic at or local child development centre, and we go there on the 25th!.

Bump Re shopping, try giving your DS a list of all the shops you need to go to (starting with just a few) write them out in order (so butchers, bank, bakers ect ect) plus possibly the items you need to get from them and get him to mark things off as youve been in each one. keep shopping trips as short as possible and gradually increase the shops you need to go to. If this works then introduce what i call our "wild card" so if for example a shop doesnt have what you need or you suddenly remember you need something not on the list then play your wild card. We now have 3 wild cards, and we dont actually need a list as DD remembers everywhere we need to go and what we need, she still hates shopping but appreciates that its not always avoidable .

Cucumbers sound good but when that is pretty much ALL he has eaten all day you start to despair!

Anyone else's LO been referred to an educational psychologist by their preschool? Have given consent for DD (3.4 yrs) to be assessed.
Any idea what they will do? Am assuming they cannot independently diagnose ASD but that their report will go towards potential evidence?