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well, first step to diagnosis did not go well - advice? (ASD)

(22 Posts)
JoinTheDots Mon 17-Feb-14 17:47:16

After Preschool said they are concerned (and are going to perform an in depth assessment of DDs developmental age over all areas) I as advised to get the HV in to assess her too, so we could get a referral to a Developmental Paed. Preschool have not named it, but they are thinking autism, it is social skills she is lacking in and lagging behind her peers with, as they put it, eccentric behaviours.

HV came round, did the assessment, DD was the model child, an angel, and scored well within the normal range for her age in all tasks across all developmental areas.

Well, great, I was not too surprised, she shows barely any "symptoms" at home. But then there are no other children at home for her to be completely baffled by.

HV has agreed at my request to go to Preschool and observe her there (not until after Easter though, and DD starts school in September), but has said that even if she does see issues, getting a referral to a Developmental Paed might not help too much as the Paed will just see the same as she did - an intelligent and engaged child who is happy to perform all the tasks (both adult and child led) and will be rated as normal on all the scales.

Surely this cannot be the case? Surely if the HV and preschool are able to provide evidence or a statement which explains what DD is like with other children, we will get a referral and be taken seriously? I know if DD is one to one with the Developmental Paed, she probably will seem NT.

I have been advised to make a diary of behaviours I think are important to record, but as i said there are very few I can, other than sometimes on play dates where she might interact a bit, but likes to play alone or alongside the other child not WITH them. Almost all the behaviours of concern are shown at preschool where I am not there to see and record.

I knew this was a long road, but I feel like I have fallen at the first hurdle. Any advice?

Redoubtable Mon 17-Feb-14 17:52:58

How old is your DD?

If pre-school are seeing these behaviours, would they undertake the recording; particularly as the potential diagnosis of ASD is a social communication disorder....so would be clear in situations where she has to undertake social communication.....
....not at home where lovely mum will be anticipating and meeting all her needs

JoinTheDots Mon 17-Feb-14 19:03:46

She is 3 years 5 months, and I shall request a meeting with the preschool leader and ask her to make some observations with dates and so on. Then when the HV comes to see her at preschool then I shall have a body of evidence to show to the Developmental Paed, since she probably wont think there is anything to worry about.

PolterGoose Mon 17-Feb-14 19:16:39

Can you self refer to SALT? You often can with pre-schoolers, it might be a way to formally highlight her social/communication difficulties?

Keep reading about girls on the spectrum, make sure you know what you are looking out for, it's often the subtle stuff, and things that become 'normal' for ourselves and our families, that we miss and don't tell the professionals.

You don't need to involve your HV at all TBH and could go direct to your GP for referral.

dontknowwhat2callmyself Mon 17-Feb-14 19:18:20

Is there anyone the Pre-school can refer to? HV's were exactly the same in my experience but Pre-school did get somebody from Early years? (I think - can't remember off the top off my head it was over four years ago) who was able to do an assessment and referral to Paediatrician.

PolterGoose Mon 17-Feb-14 19:30:54

Oh, yes, well remembered dontknow smile ds's nursery called in the LA's early years advisor, she was bloody brilliant (in fact reading her report now 7+ years later it screams autism but I knew nothing back then)

Ineedmorepatience Mon 17-Feb-14 20:04:44

Hi join, dont worry you havent fallen at the first hurdle. IME HV's know very little about Asd/autism. I spoke to mine numerous times about Dd3 and she was clueless. My local so called specialist HV is similarly useless at spotting Asd in girls.

Ask your Dd's pre school to make written observations and video observations. Then go to your GP and ask for a referral to a developmental paediatrician. While you wait keep a diary of any issues and also find some articles about Asd in girls and do some reading.

Arm yourself with knowledge and remember you are the expert in your child. Be prepared for a long process and dont give up. If you believe your Dd needs a dx then you are probably right.

Good luck smile

JoinTheDots Tue 18-Feb-14 10:09:02

Thank you everyone.

I have spoken to the preschool who are reluctant for me to self refer to any other services (OT and SALT were my thoughts, although I have been to the SALT drop in twice and on both occasions sent away with a "she is developing in the normal range" message) until they have completed the in depth assessment of her developmental age (the Isles test? Sounds like Isles when they say it anyway) and the HV has been in May. I am disappointed, purely on time scale, because I was hoping to get things in motion before she starts in reception in September, which I doubt happening now. In May I shall ask them to provide me with the assessment results as well as records of her behaviours which are causing concern, and if the HV has not referred us already, I shall go to the GP and get the referral with my evidence. I will also ask about an area SENCO or LA specialist in case they want to get one in to provide more back up.

I have done loads of reading about ASD in girls, and I still think there is something going on and something not right, but I struggle to see some of the key factors listed as having to be present to make a diagnosis. Mostly the need for routine (she is not bothered by routine) and the special interest - she does not have any obsessions or special interests, but then is she too young for that? She does not melt down, nor does she go into her own world, but she clearly has no idea and no clue how to make friends or be like her peers when interacting with other children. She wants to have friends, and talks to me about "X, X and X are my friends arn't they?" but when they are invited over, she pretty much ignores them! I can get her to interact if I introduce a game of catch or a board game where they take turns, but I have to be there to mediate in case of misunderstanding.

More reading to do I think... Thank you everyone again. I do not know what I would do without these boards.

zzzzz Tue 18-Feb-14 12:14:02

Why do you care if he nursery are reluctant or you to self refer? You are voiceing your concern. What they think is immaterial.

I can't see the rational behind waiting for other assessments to be done. They are totally different processes and there is usually about a six month waiting list .

JoinTheDots Tue 18-Feb-14 14:10:15

I suppose because the help from a SALT or OT would need to be in the setting, so I feel like I need them to be on board with it. She shows no sensory or social communication issues at home, only at preschool.

The preschool only mentioned the sensory stuff in passing (loves water play and dribbling glue over all other activities, sometimes twirls on the spot, or flaps when running) and we're not very sure it was worth pursuing at this stage. I think they want to be cautious and prefer a wait and see approach to see if she matures out of any of this.

The fact I have been to the SALT twice and been sent home with her pronounced nt also made me think it would be better to have them on side so it is not a third trip where I say there are issues and they chat to her and say they can't see any.

zzzzz Tue 18-Feb-14 14:16:21

SALT can't pronounce her nt.

Have they assessed her or just observed her. Ie did they write a report?

Wait and see, is a very positive move for them because it requires no effort on their part.

The setting have to "be on board" if medical professionals tell them their is an issue.

I think the hiarachy for want of a better word is skewed here.

Bottom line do YOU think there are delays/differences?

JoinTheDots Tue 18-Feb-14 14:42:46

I do think there are issues, yes. I do not know what they are exactly, but she is delayed with her social skills, for sure.

SALT observed and then wrote a report. Both times, something along the lines of "parents concerns were X, child observed, showed no signs of X but did show good vocab, good understanding, ability to follow instructions etc" It was a one sided sheet with boxes for them to fill in from the drop in service, everyone got one after their child was seen. I think if they had seen anything to concern them, then I would have got to the next stage as it were, and got a proper report?

Maybe I can request to sit in on some preschool sessions after half term finishes and make some notes and recordings of my own to take to a GP to get a referral to the Developmental Paed, if they are still keen to adopt the wait and see, after May approach

zzzzz Tue 18-Feb-14 14:53:15

What exactly do nursery see as the problem?

Were they able to give examples?

Do they have experience of ASD/language disorders/delay?

What part of socialising is giving her the most trouble?

JoinTheDots Tue 18-Feb-14 15:08:14

They asked me to meet with them (the owner) and said they were concerned with the growing gap between DD and her peers in terms of her social play.

She is still preferring to play alone or alongside other children rather than with them. She also chooses to get a reaction from another child (e.g. kicking the underside of the table at snack time because she knows it upsets one of the boys) rather than joining in with the imaginative play and role play her peers all seem to enjoy.

They said she sometimes appears to be in her own world, preferring to be there than interact with the other children and that she has a very short attention span flitting about the room not spending much time on anything unless she finds something she really likes, then she will concentrate on it for long periods.

When I asked what kinds of things she liked, they mentioned the sensory thing, saying glue, water, and when outside running around flapping her arms to chase people, or twirling absent mindedly on the spot singing songs to herself.

When on playdates or when children come over to us, I see that she is not interested in playing with other children, just as they said, but I have never noticed the flapping, twirling, or short attention span at home. Nor have I seen anything sensory, although she does like gluing and jumping in puddles, but no more than any other 3 and a half year old.

I know they have had other children pass through who have been diagnosed with ASD, so there is some experience there, but it is a very small village preschool who have less than 25 children at any one time, so its not extensive by any means.

zzzzz Tue 18-Feb-14 16:32:46

Did you have any concerns before they brought it up?

How is she at following instructions?
How is her diet?
How well does she sleep?
Does she pretend, or copy scenarios?
What is her favourite toy/game/past time?
What are her self help skills like? (Dressing/cutlery/teeth/toileting etc)
Is she very good at anything?
What does she find hardest?

I would now go to the GP and ask for a referral to a developmental paediatrician given all that you have said here. HVs in my experience of them are hopeless when it comes to children with additional needs, let alone your DD who may well have ASD. They are simply not trained or skilled enough.

Many SALTs as well are simply not skilled enough with regards to ASD either; the one who said your DD was NT did you and she a great disservice. Same with the HV. Again these people are not qualified on any level to make such a pronouncement.

YOU are her best - and only - advocate here.

JoinTheDots Tue 18-Feb-14 17:21:19

Did you have any concerns before they brought it up?
Yes, I have always felt she was behind socially. Never ever been interested in other children, and will ignore adults who are passing and say hello, how are you to her if she does not want to reply to them. Sometimes I cannot put my finger on it, but I have felt she was different since she was about a year old.

How is she at following instructions?
Fine, she can follow a 3 step instruction e.g can you go and get your cereal from the cupboard, put it on the table, then get a bowl and spoon?
She sometimes has selective hearing though (mostly at bedtime) if I want her to do something she does not want it. I felt this was normal.

How is her diet?
Pretty good, she has a sweet tooth and has become more fussy over the last 6 months, but only in as much as she has gone off some veg she used to like.

How well does she sleep?
She finds it hard to wind down, even though we have a good routine, which she makes excuses not to follow every night. She chats to herself for a long time before dropping off, making up stories and stuff. She also still wakes on average once in the night requiring reassurance from me to get back to sleep. She naturally likes to stay up late and sleep in late, if I let her. Which I don't because of preschool.

Does she pretend, or copy scenarios?
Yes, she loves to pretend. She has watched her cousin playing a game on the computer (called Pikmin) and now likes to pretend her toys are from the game and rescues people and whatnot. She loves to play shops, build houses in her duplo and play families. She is better at pretend play using toys than pretending she is someone else herself though (does not really like dress up for example).

What is her favourite toy/game/past time?
Not sure she has one, she does love technology, playing games on the Cbeebies site with me, but she equally loves board games like snakes and ladders, craft activities, being outside and doing very normal boring things like shopping or helping cook or wash the car.

What are her self help skills like? (Dressing/cutlery/teeth/toileting etc)
Not bad, she is hypermobile so might have taken longer with some of these, but she goes to the loo by herself as long a she can reach to get on the seat (I always check she is clean after a poo, as she needs practice with this), and can dress herself with minimal help (will get things on backwards, and still cannot do socks). Brushes own teeth, but prefers to chew the brush, feeds herself, but likes me to blow on her food first if it is hot. Can be messy at the table if it is soup or something like that. Does not use a knife.

Is she very good at anything?
No, I do not think she is outstanding at anything in particular, unless you include winding me up?

What does she find hardest?
Her hypermobility influences this, so gross motor skills like scooting on her scooter she finds hard. I think it goes back to the social skills thing mainly though. She clearly finds it hard to know how to interact with other children. She does not speak to them very much, if she wants to play she kind of just goes up to them and invades their personal space, grinning, or trying to give them a kiss, or trying to chase them to initiate play. You can see her watch groups of children like she has never seen anything quite so baffling in all her life. She genuinely looks confused. I am relating this from children's parties, and the waiting room which we all gather in for 5 to 10 minutes before Preschool opens so it is a narrow snap shot. It makes me sad though because she talks about wanting friends, and asks me if people are her friends, and also role plays with her toys about friendship ("Polar bear is very sad because his friend is lost. Oh, its ok, Miss Dolly has found him! They are happy now.." etc). She mostly plays alone when other children are around though, or if they come to the same toy as her, she will let them use it at the same time, but not interact with them at all.

Redoubtable Tue 18-Feb-14 17:23:47

Join I think you are at the toughest stage here; where you are pushing for professionals to see what it is that you see.

RE ASD type disorders: theory of mind matures fully around age 6 (as I have been told by SALT) so for them to agree that there is an issue at her current age is probably difficult unless you are talking to someone with experience in this particular area.

That is no reason to give up however.

As the Attila mantra reads- you are your child's best and only advocate.
You know her best.
A good GP will do as mine did when I hit a brick wall with school and SALT...that was to get a referral sheet as she said 'I have a policy of listening and believing that parents know best'.
Chase a referral to a specialist Paed.
Document what you have put on here. Ask pre-school to document what they have described so far.

ProfessorSkullyMental Tue 18-Feb-14 18:27:57

i could see issues with my ds from a young age, but he had constant refusals to assess (he'll grow out of it/he just needs to mature) until he had done Reception and got into yr1 at school when the teachers FINALLY agreed with me that something wasn't right.. and referred him to the OT and set in place a School Action Plus IEP for yr2.

We just got our diagnosis of DCD and a referral to a paediatrician for autism assessment aged 7.

Do persevere

zzzzz Tue 18-Feb-14 19:14:32

Mine is hypermobile too, and of course that is often a comorbid. We are fine with gross but pants at fine motor control due to sore floppy hands.

My belief is its very unusual for mum to voice concerns about a child's development unless there are concerns.

sammythemummy Tue 18-Feb-14 19:59:41

She sounds like my dd minus the hyper mobility issues and not playing with her peers.

My dd failed the asd test at nearly 3, had to seek another one at 3.6.

Get another referral in place, the child development team should be observing your child in every setting including nursery.

Does she get help with her social skills at nursery?

sweetteamum Tue 18-Feb-14 20:28:56

I'd certainly be seeking assessments from the other agencies myself too. It's not worth the wait and see approach, as there's usually a waiting list anyway.

Going back to routines - I didn't think my asd daughter needed routine and wasn't bothered by it. After I kept a diary for a month I recognized she would meltdown after the occasion and part of her routines were only doing certain things at certain peoples houses (only eating toast at uncles, needed a biscuit every time she'd go to grandmas, need to get the play till out at nans), I'm sure you get the jist smile

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