Toddler Developmental appointment - Details of how the assement went below!

[Fluxuspoem]

Hi

My little girl who is 2.5 years has been referred for a developmental check following a speech assesment ( play and talk) a month ago which told us that she is a bit behind her speech

I was told that the referral could take more than a year to come through but apparently they had a spare appointment for next week which they offered to us and we took it.

What should I expect? should I prepare anything? what will they do there? who will access Christina ( as in what type of specialist)

There are fears that she may have ASD but nothing confirmed so I am very keen to be totally prepared for this very important appointment

Many thanks and Hugs to all

Alex

 

[Fluxuspoem]

Also could anyone explain to me possible steps, in case the developmental check shows that she needs further assessment for say ASD? what next?? I am reading a lot of acronyms: CAMHS, ADOS, SaLT, OT and have no idea what they are (on the net) any advice from your experience with an Autism/ ASD diagnosis from start to finish? x

 

[_Vicky_]

Not sure if it is a different type of assessment but Sam had an assessment it is called a Schedule of Growing Skills and they assess nine areas. Sam wasn't walking at 18 months hence the referal.

The assessment is really nothing the assessor will watch how they play give them things to see what they do and show them books. There is nothing you need and nothing you can do to prepare - it's not stressful to them in any way.

The results are split into nine categories and LO will be marked in bands of three months - if they are more than one band behind their actual age this is deemed as delayed. Sam was refered to physio as his gross motor was delayed

I hope that helps x

 

[Tiff]

I can explain ADOS

Its the Autism Diagnostic Observation Schedule. Its supposedly the "gold standard" in diagnosing Autism. Claire takes hers in October.

 

[_Vicky_]

SaLT -Speech and language therapist

OT - occupational therapist

Xx

 

[sam2eb]

My son was assessed at a development clinic at the start of the year. He was seen by a paediatrician, an occupational therapist and a speech therapist.

The paediatrician went through my sons development, when he hit certain milestones etc. The occupational therapist got him to do little puzzles, watched how he held a pencil, asked him to copy things she was building with bricks. The speech therapist didn't do much as my son has been seeing a different speech therapist since he was 2. After they had all talked together they advised me that they were recommending my son be assessed for autism.

A couple of months ago he had the ADOS assessment. It was carried out by a specialist speech therapist. I wasnt actually present during the ados test so I'm not sure what all was done, but I was assured it was all play based and there was no pressure on my son to perform certain tasks.

We were given our diagnosis straight away with a more in depth follow up a few weeks after.

Its all very stressful and worrying but there isn't really anything you can do to prepare. Its really good that your not having to wait ages to be seen x

 

[Fluxuspoem]

Thank you all so much this is very helpful! Turns out the appointment is actually tomorrow!! I am greatful this came through so soon ( through a cancellation) but I am worried that eventually they will tell me that she does have autistic related tendancies, ASD or even Autism. Its really confusing with her, some days I am convinced she is within spectrum other days she is very good and co-operative and responsive so who knows?

In any case I think the appointment tomorrow is the first step towards understanding her needs, whatever they may be.My family doesnt know ( apart from my husband) that she has been referred they all think that i am mad for thinking that something is up.

I jsut hope and pray that if she needs further assesment ( ADOS) that it comes through quick enough in order to be able to access available services if we have to, for her. I am really keen to help her as much as possible if she is autistic, I really want to give her the best start

Thank you all for your time, I will update here tomorrow if anyone is interested xx

 

[Tiff]

Definitely would love to hear how your appointment went.

 

[Fluxuspoem]

Hi

So we met with a Senior Consultant, she was supposed to be the last person we should see and today the appointment was with a junior doctor but somethign happened and she did it which was lucky.

We went through Christina's life, health, illnesses, concerns and traits that worry me. She did observe Christina here and there and didnt ask many quesitons as I was really talking about everything.

After an hour and a half she said to me that there are two situations: she is either delayed on the language understanding front OR she is within Autistic Spectrum she actually said there is a high chance of the later.

She didnt want to diagnose as she said we now have to see more people and they they will compare their reports etc - she also said that she may arrange a visit to the nursery to observe Christina in that setting this may speed the diagnosis up apparently but she needs approval from above for that tbc.

She told me not to look at it as an illness if she has autism but to see it more as a personality trait. She said that autistic girls are quircky and delightfure albeit very vulnerable as they have tons of innocence in them. She aasked me to accept her little things as her personality and move on from there ( if C is autistic which I think she probably is)

We now have to wait for her report and further referrals she said it will take a few months for the whole thing to be completed but she said it was good that she already saw Christina and she knows what its all about when the do the final assesment.

I was ok at the appointment but when we came out I broke out to tears. I know that this has been in my mind for over a year but I wanted someone to tell me that I was perhaps wrong, that she is all ok. I suppose she is all ok she is just different.

When I asked about special education she said that the way she sees C now she looks like she will be ok in mainstream school ( that idea terrifies me in case she gets bullied) but she said that because her learning ability is there there is no real reason why she would need a special school.

She said that if C is autistic there are a lot of things that they can do that will make her go a long way from where she is now. I think she was referring to occupational therapy through play and teaching social interaction.

My husband was positive about it he thinks that its best that we now know that somethign is up so we can help her, he sees it as more of an insight to her personality as I I see it still as an impairment.

In any case , not sure where we go from here to be honest.. any advise from anyone that has beenthere would be greatly appreciated.. xxx

 

[sam2eb]

Im sure your exhausted after the day youve had! It can all be very overwhelming, even if we are expecting them to tell us these things its hard listening to a professional actually say it.

We are only slightly more along in our journey. My son (he will be 4 in Oct) was only diagnosed at the start of last month and we only met last week for a more in depth follow up with the person who assessed him.

We have been referred to the Autism Intervention Team in our area but havent heard from them yet. Im not 100% sure what they are about but I think they can help with pretty much any difficulties we are having.

Getting a correct diagnosis was very important for me. I was always aware something wasnt 'clicking' properly with my son. I just wasnt sure what it definitely was. Now that he has been diagnosed he can be given the proper support and help he needs to shine So i suppose I am more like your oh in that sense. Im sure that once you have time to process your feelings you will begin to think this way too.

 

[Fluxuspoem]

I am not sure i am coping very well with it all, I keep crying since yesterday not sure why I feel so devasted

 

[Tiff]

I imagine you are grieving the "normal" child that you thought you had. I personally don't think there's anything wrong with it and there is definitely a process you go through when trying to make sense of everything when they mention Autism. Its not easy, especially when you have researched and seen all the worst possible cases when it comes to it.

Take your time, be upset. You are fully entitled and its completely understandable.

I'm glad you are going to get through this wait somewhat quickly. I'm also green with envy We've been waiting for a year and 8 months so far.