Just came back from ADOS- Don't know what to make of it...

[adrianna1]

Here is my DS report...

Communication: Verbal- DS was mostly non-verbal throughout the assessment ( he normally babbles and vocalises). He used the word, 'pop' in the appropriate context during the assessments.

Non-verbal: DS demonstrated some nice examples of pointing during the assessment. During the joint attention task where the therapist gave him an opportunity to orientate to her eye gaze and look out of an object out of reach, he turned immediately and pointed to the toy that was on the shelf. He also used to a point and gesture directly upwards with it to indicate to the therapist that he wanted to balloon that had been put back in the box.

He coordinated the gesture with eye contact and a 'blow' gesture. DS used the blow gesture (pursing his lips and blowing out air) also to request more bubbles and during the birthday party to indicate to blow out candles.

Social interaction: DS eye contact was inconsistent throughout the assessment, and he found it hard to return a social smile (he usually does, but down to attention)..although he did smile etc. DS could demonstrate shared enjoyment during a few activities such as bubble play, balloon game and peek-a-boo. At one point, DS brought a toy aeroplane to his mother to show interest and gave his mum the deflated balloon to blow it up using a blowing gesture. He could respond to his name when it was called immediately. DS demonstrated a good example of coordinating eye gaze and a point and a smile during the request a snack activity.

Play: Played appropriately with the toys.

Behaviours: Played with the cause and effect toys for a period of time and resisted the therapist's attempts.

• Overall she said that even though my son interacts well with me, he should be able to do this with a variety of people and not wait till he is comfortable with the person

• He has no routine, no sensory, no behavioural issues..so they reckon he does not have classic autism.. has it.

• He should have a number of friends

• Even though he shares things with me..he should be doing this all the time.

So his diagnosis is autistic spectrum disorder and moderate learning difficulties.

Hi Everyone

Thanks for your support. I feel a bit better. It was so weird, because I thought that if they told me that he had autism, then I'll start crying. But it has taken me 9 hours, to feel the grief and let it all out.

@zzzz I think the issue is that my son had all these skills at the right developmental age...but over time his development became slow. The doctor said that he has a delayed development, rather than disordered. But because he has a diagnosis of autism, his development is disordered. Hope that makes sense...but when I see the doctor again, I'll clarify what she means by that.

However, she did say that he does not have a language delay, because he would still be sociable and was wondering if he would still have issues without his delay in language.

But anyway...who knows my son may surprise me. But in the meantime, I'm not going to focus on the diagnosis but work on his needs :)

Hello
We were in this position last year and it was very hard. But a year on I see it has got help at school that we would not have got otherwise.
That's the massive silver lining for me - the diagnosis unlocks help

Hi Adrianna
My son has a dx of ASD (and ADHD) with mod/sev LD but it took a few years to collect up. He also had minimal language at 4. With each diagnosis I was sure before (except for knowing there was more to it) but as soon as we got the diagnosis wondered if they had made a mistake. It takes a while to orientate and adjust and more particularly work out how the diagnosis will help you and others (school etc) understand and support the child.
It is better to start school with support in place so it is far better to have a diagnosis in place earlier rather than later. My ds started ms school without a dx and was mostly left to sink or swim and we are still dealing with some of the consequences now - he is 14. The disadvantage of diagnosis at a younger age is that it is harder to assess and define exactly where the difficulties lie - although it sounds like at the moment language and social skills need support (as they usually do). In theory the diagnosis could be more clearly defined at a later date if needed, although I have no idea how one could do this through the NHS.
I think it is normal to feel numb, depressed confused and disbelieving soon after a diagnosis - even when it is expected. I certainly did.

• They also were asking me if my DS sleeps in the bed with me??? I don't know if this is related to ASD or not.

Hi zzzz

Thanks. Your always replying to my posts.

I see...maybe they thought for a moment that my son had an attachment disorder because of him witnessing some stuff.

Hi zzzz

But what does co-sleep got to do with ASD...is it the sleeping patterns they mean?

zzzzz is right there are so many different presentations. DS is between kanners and aspergers. Most people (ie school) were (still are) shocked about his dx of asd as he just doesn't present behaviours as the other asd children they have at school. Same for his other dx. It was the asd I had trouble taking in as I never really thought it was there.

That's interesting blueeyed DS senco has been reading up on ASD as he doesn't present the same as other pupils who already have a dx - she said it's amazing how varied the presentations are and infact he seems to present more of the traits than some children who have a dx. (We are still waiting for assessment) she actually mentioned things I didn't think other people noticed - his stims/tics etc.

Have I mentioned before how much I love her?!

I wonder if the sleeping thing is related to speech? Salt asked me about DS sleep. Although he'd sleep better if I let him co sleep with me!

Was crying again (sigh) but DS saw me and gave me a hug. So feeling a bit better.

at hug. if I cry my DS just stares at me!

Hi Adrianna,
Sorry to read about your assessment and the confusion and upset it has caused you. I agree with your plan to focus on having his needs supported to the best you can and move on from the diagnosis.
I have been hung up on getting a diagnosis for my DD for a long time and at our ADOS they decided there was still no diagnosis to make and her speech was so disordered that they needed that to improve to assess her again. She did not score high enough in other areas to diagnose ASD at that time. Also taking into account the other observations, etc.
So I have given up chasing a diagnosis (as much as I melt down about it from time to time as I struggle to explain to people why she can't speak properly). So instead we are privating working with additional SALT and working with her on more SALT related activities at home and trying to give her as much help as possible in the speech area as it has always been the area we have had the problem with - way before anyone questioned her social skills.
You know your son and the areas he needs support with - go fight for the best support you can get for him.
Good luck x

Hi Sittinginsilence...

Does your DD have any delays in her social skills...?

Thanks for explaining to me about your DS and I will try to move on from the diagnosis..even though I know it is not ASD.... but speech is my DS's main issue so I'll just keep on working on that...

Thanks :D

I think I need your senco to come this way and educate my senco you are

I believe that the issues she has with social interaction are strongly connected to speech and she is very social with those she knows understand her - so us, family, teachers, her SALT - but needs support interacting with others, especially peers. So not specifically delays in social skills but certainly impaired in social skills.

And as our psychologists will not assess her for ASD again til she has more speech, I'm trying to let go of focussing on a diagnosis and work on the speech. Whether she will need to be assessed again or will end up with an ASD diagnosis - I'm still not sure, but I'm learning to let go of it defining her and just work on what we can for now.

Very hard though....:S