SIS think Dd does not display autistic traits

[OhWouldYouJust]

Hi all, we are currently in the assessment process for our 3 yr old dd.

Her problems are speech delay, poor eye contact, obsessive behavior over circular shapes, severe sensory issues, demand avoidance, poor sleeping, no sense of danger in or out of the home, rigidity with food, severe moodswings that can literally go on for days and poor social skills outside of the home environment, we have been told she has the basic skills of an 18 mth old.

Specialist inclusion services came to see us yesterday to see what support they can provide and assess what support will be needed in September when dd begins nursery.

Now normally Dds social skills inside the home are good, but it takes her a good hour of hiding before she will approach the person visiting. This is exactly the behaviour she displayed when the first part of her formal assessment took place within our home last month. The person who carried out the assessment then said to us dd fits into the diagnostic criteria for ASD but this would be formally diagnosed on our next appt.

Now yesterday she was completely different and was smiling at the lady, and making eye contact, playing with her. On seeing this the SIS lady said although we describe an autistic child, that because she showed good social skills on this occasion she couldn't be autistic, won't need a statement and will cope fine in mainstream school.

Does this one occasion really mean these problems may not be ASD related? Feel so in limbo at he moment, if it isn't ASD what could it be?

She then on the other hand advised us to apply for DLA for Dd.... feeling rather confused

Bump - Any advice appreciated!

The woman will be in no way qualified to diagnose ASD and in fact shouldn't have said that.

Don't get worried that your DD won't get support as diagnosis is a complex process and done over several visits in different situations usually.

But do be heartened that she can present so well in some situations :)

zzzzz

You know thats exactly what my husband said to me - im putting too much into that one sentence (born worrier!) she did say she thinks there may be Sensory Processing Disorder but she also said that isnt classed as on the ASD spectrum? Cant you tell im new to all of this!!

She definitely does flit between severe and mild depending on her stress levels, thats what im concerned about i think, that seeing as this woman has said she will not need a statement that all of her needs to keep her calm wont be met.

FanjoForTheMammaries

Thankyou, thats reassuring to know, i think its just as september really doesnt seem that far away im concerned about getting all the support in place for her.

The Inclusion Co-ordinator at DD1's preschool told me she was 'just immature'. She goes to Special School now

An inclusion co-ordinator isn't medically trained so shouldn't be mentioning specific conditions at all, especially in a child this young (a lot of things from glue ear to adhd to ASD play look a likey with other things when kids are young - it's why a few neurological disorders are not diagnosed before age 7). You have no way of knowing at this stage whether or not it's something that can't sorted with 6 months of the correct therapy, so to be worrying you with lifelong conditions is a bit unprofessional tbh I think.

Sensory processing disorder is often a subset of ASD, but can be a condition in and of itself alone.

It's well worth keeping a diary, noting any environmental trigger for behaviors that worry you. (eg noisy, new people, strong smells). Do make a note too of when she's at her most comfortable as knowing what helps her goes a long way when they start school! The diary can then be taken to any diagnositic appointment.

This lady also isn't the person who will be making a decision on whether or not your child needs a statement - only a full assessment will determine that. (Would you know it but one of the people who legally has to contribute to an assessment for a statement is a peadiatrician!)

DS was 'missed' for a year because he had an exceptionally good appointment with a pead, where he basically played to the gallery and did everything right.

'There's not much wrong with this one' declared the pead.

6 months later after nursery basically taking me into a room and repeating 'they can get things wrong' for an hour, I was re-referring. And 2 years later we finally got a dx!

So. She could be right, she could be wrong, but she is one person and she is not the person who will be making the decision. She shouldn't have said anything at all, really. Keep doing what you're doing, don't be fobbed off. Also good to know that girls are much better at masking their difficulties.

(there is also a phenonemon common to this board, called 'FFS DC did a good appointment' when DC's attend vital assessments and do really well, leading to much hair-tearing from parents who have been dealing with ever-increasing meltdowns and problems and taking to the gin for the last 6 months. But that's another story!).

Thankyou WilsonFrickett, its difficult isn't it? kinda made me feel like I was slightly losing it as I was gobsmacked that on this occasion she was playing ball!! Didn't know that girls can mask the signs sometimes so that's useful to know.

Good to hear you finally got a dx for your dc, I can only imagine how stressful it must have been with it being missed initially.

Was definitely a FFS moment at the appt!! I definitely feel like hitting the gin most days at the moment!!

stick around here, lots of support communal gin drinking and help. Do some searches around the topic, or start another thread, looking for girl-related info, I only have a boy but there are lots of other posters who will be able to fill you in on masking. Essentially, girls 'cover up' better than boys (one of the reasons ASD is so low in girls compared to boys is mis-diagnosis, not that girls don't get it).

Have got a girl with fairly severe ASD, and even then some people initially told us she didn't have it. Always here if you have any questions :)

many girls have fallen under the radar and are missed for ASD assessments because they are excellent social mimics and adopt the socially acceptable shy and withdrawn traits.

evidence is now being found that many women who have in the past been diagnosed with eating disorders for instance are now being reassessed and DXd with Aspergers

there is a very good write-up on the NAS website

my own DD is DX ASD and is waiting for assessment for SPD too, she is very (read toe-curlingly ) high functioning as in she finds it hard to switch off at times, people often mis-read this for confidence, but to the educated eye it's obvious they are using very finely honed mimicry.

there are a few of us around with girls on the spectrum - there are some very supportive groups on facebook too if you're into that too.

Will definitely be sticking around for the gin and advice

Do any of you have older children? I have 2 dds aged 5 and 7, and trying to explain to them that there is a reason why their sister behaves the way she does seems impossible, they just constantly ask when she is going to grow up.

Had a particularly trying day today, dd has spent the entire day from waking, galloping in circles making this monotone wailing noise. Such a contrast to yesterday!!

We went to the park earlier, walking as we don't drive and it was awful. I honestly dread journeys on foot as she refuses to walk, gets really distressed and runs toward the road, so I end up carrying her everytime, but its more like physically restraining her as she hates being picked up too.

Honestly contemplating putting her back in the pushchair as its near impossible to go out with all 3 dds on my own as there are so many roads to cross.

Then there is the night. They all go down at 6.30 yet dd does not settle till 9-10 pm and is then awake and having tantrums from 3am.

Sorry for the big old vent there!!

Tonight I think will mainly consist of gin and some searches on girls and ASD as suggested down thread.

I have a Dd with Asd too and she is also high functioning. The article linked by esther is really good and worth a read.

My Dd3 can mask her Asd very successfully at school and in some social situations, however this is extremely hard work for her and she needs alot of downtime.

I would recommend keeping a diary of your Dd's issues/difficulties, what causes them (if you know) and how you deal with them. My diary was the thing the made the proffs sit up and take notice and stopped them looking at me as an over fussy parent.

Good luck

Have bookmarked the link to read tonight, thanks Esther

Am going to begin a diary, very good idea, thankyou for that.

YY to diary keeping

our clinician kept ours between appts so she could go through it with a fine tooth comb, it's been very useful

If it's easier and safer using the pushchair on routes with busy main roads then do so. I used a pushchair for much longer than most as DS was a bolter who could undo ALL safety reins invented + I live in an area of London notorious for lunatic foreign drivers who wouldn't know a red signal if you walloped them round the head with it.

Using the pushchair meant we could actually enjoy our time in the park where DS got his safe exercise without having a nervous breakdown getting there. He's an only, so I didn't even have any other kids to watch like you do.

For night times - there are sleep clinics at some major hospitals (I know Paul Gringrass runs one at Evalina Children's hospital, part of St Thomas's). If I'd known such places existed, I would have demanded a referral years ago, instead I endured years of being condescended to about lavender oil & bed time routines. Don't make my mistake.

I would definitely put her in a pushchair when you go out.

There are some great 3 wheelers around that take children much bigger than standard buggies.

We used one with Dd3 until she was nearly 5 if we were going somewhere where she might not walk or want to sleep/hide.

Have a look on ebay for a mothercare urban detour or a jane 3 wheeler or a nipper 360, they all have big seats. Mine didnt have a swivel front wheel but it was still easy to push.

I would recommend thinking of ways to make your life easier eg pushchair/reigns and stairgates. No useful advice about sleeping or galloping round in circles although Dd3 has pretty much grown out of that.

Good luck

What does the sleep clinic aid with?

We actually have a sleep clinic at our main local hospital, so I would definitely be open to that.

Ineedmorepatience

Thanks for that I shall have a look on ebay later . Dh isn't too keen on the pushchair idea as he is worried we will encourage her to regress but honestly I'd take anything over the current situation!

Its not about regression, its about where she is developmentally and keeping her and your other girls safe.

If she slips out of your hand and runs into the road, what would you do? Leave the others to chase her? And what if she is hit by a car infront of her sisters?

Sorry, not trying to scare you but your DP needs to realise that she is not ready yet to cooperate no matter how much he wants her to be.

Use the chair...we use it with DD not because she won't walk but because it lessens her sensory load if she doesn't have to walk..it really helps to put her in it when going new places or places she is not sure of, she then gets out and in and is much more happy and secure..

She looks 7/8 so we get some funny looks but I don't care. :)

(she is 6)

Ineedmorepatience

Am going to show him your post when he gets home. If that doesn't convince him nothing will! But either way iv decided the pushchair is the way forward.

Fanjo dd is 3 and rather small so shouldnt attract too many looks, well no more than we already do!!!

Hope he doesnt hate me when he hasnt even met me