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

Ineedyourpatience

He won't hate you it will simply add more weight to my argument besides he's a bloody man

I know exactly what you mean, my DP said something about Dd3' "illness" the other day I was
She was diagnosed with Asd 18 months ago and he still doesnt get it
I love him to bits but sometimes I could throttle him

OhWouldYouJust, has your DD been referred for a hearing test as well? If not, it might be worth asking for this too, to rule out any hearing difficulties. My DD is 4.1 - she passed her newborn hearing test. She often didn't respond to her name, but would respond to other sounds, so I thought her hearing was fine and she was just hearing selectively. The paed said she should have another hearing test anyway; she has now had two and both indicated glue ear. We are waiting for appointment with ENT consultant. She has ASD and and language disorder, so her issues extend beyond a hearing difficulty, but it certainly wouldn't be helping!

Girls do sometimes seem to present a bit differently. If it wasn't for her very significant speech and language delay, I'm not sure that DD's difficulties would have been picked up so early. She is very affectionate, fairly sociable and well behaved. In many ways, easier to manage than her NT older brother!

DD was in her buggy until 3.7 - she had no sense of danger at all, and can run like the wind. She is very tall and her feet were scraping the ground but it was the best thing for her safety (and my nerves!). Six months on, she now walks beside me and will let me hold her hand most of the time. This time last year, I couldn't have dreamed that we would have reached this stage.
Have you come across the Hanen book "More than Words"? It is brilliant, it really helped me. I read about it on here of course!
All the best to your DD and you.

Oh yy to Hanen, can't believe I didn't mention it, it's usually my default response to first time posters! (Not because I'm unimaginative, but because it's that good).

marchduck

Yes dd has a hearing test booked on 11 march, she definitely shows selective hearing at times, but we shall see.

Will have a look on amazon now for that book .

Better night lastnight, although dd took til almost ten to settle she slept until 6 which is practically unheard of at the moment, so feeling a little spoilt this morning!

"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".

Snort.

SIS lady is totally unqualified to be uttering such pronouncements and so would ignore this comment of hers. What if she is wrong re school as well?. I feel that sometimes such people say such things to try and put off parents from applying for more support in school, that is sometimes said with money in mind.

I would get the ball rolling with regards to a statement request asap and you can make this request to the LEA. www.ipsea.org.uk is good and has lots of information on it, use the letters there. Arm yourself as well with a copy of the SEN code of practice (this is online).

Ineedmorepatience

A lot.of my family seem to think its something she will grow out of, my nan especially thinks these types of conditions are invented to excuse bad parenting .
Needless to say we are not on the best of terms right now!! No matter how much evidence I give her, she thinks there is nothing wrong with Dd apart from me and Dh.

Makes me so angry, especially as we have 2 older non affected children who have been raised in the exact same manner!!

AtillatheMeerkat

Can I apply before we have a formal diagnosis? I was under the impression we had to wait?

no, you don't need a diagnosis.

As choc stated.

I would make the request yourself and soon because you know its been done then. You will need to write to the Chief Education Officer at your LEA and give them six weeks to reply.

Also you may not be aware that statements can take a minimum of six months to set up even if the LEA do agree to such assessment.

As an aside can you on a personal level see your DD managing in a nursery without any additional support?. Likely not so that also knocks any idea of the SIS lady thinking otherwise into the bin. Also I maintain that such pronouncements are made by unqualified people to put people off from applying for additional support because that all costs a lot more money.

Arm yourself with knowledge and keep posting on here; after all knowledge is power!!!.

Would also suggest you apply for DLA and use the Cerebra guide to do so as well as asking on here about actually filling in DLA forms. Those forms can be extremely tough going.

Re the sleep clinic - there's a myriad of potential solutions from nose clips to aid night time breathing, to weighted blankets and melatonin. They really are the experts (unlike the HV etc) and well worth seeing. Sleep deprivation causes all sorts of issues.

Re the family - ignore, and do what you gotta do. I know it's hard (I've shed a few extended family members along the way). Some come round when it's all made "official" (took till my son was 8 in my sister's case gggrrr!), some never will. You just have too much on your plate to take on their issues too.

I was with a group of friends when we witnessed a hit and run on a father and his 3 year old. It's mentally scarring, but did mean I got full back up whenever anyone attempted to criticise my extended pushchair use. The alternative doesn't bear thinking about.

You definately don't need a diagnosis to get a statement. DS's diagnosis arrived nearly 2 years after his statement. The law says a statement is based on NEED, not diagnosis.

Atilla's post is inspired re where to look for help with DLA, statement etc - do take full advantage of these organisations. Good luck!

We have the forms on the way for dla, will check out that guide for filling them in, have heard from many people that they can be nothing short of a nightmare so thankyou

I really don't think she would cope without any support, I had no idea that it could take so long to process! Better get on the case sooner rather than later I think.

So so glad and grateful I have posted this thread, I definitely need all the advice I can get at the moment, and as you say knowledge is power!!

bochead

Once again a wealth of useful and invaluable information
I had no idea a sleep clinic could be so useful in these cases I thought they were for sleep apnoea and insomnia only

The overall theme is some services will be able to help you, some won't sut DD's needs but you have to be the one to track them all down and make those decisions. It's rare to be pointed in the right direction, IYSWIM. (except on here). You have to take control of everything. Which is really exhausting and frustrating.