ASD children are all different....so why can't they see what i see! (Sorry very longggg)

[mysonben]

Having a bad time again.
I am convinced DS has asd, it took me a while to understand it and realising it since
Paed said DS ,4, is on the 'mild' end of spectrum.

DS has a speech delay (of around 15 months or so) both in expressive and receptive language, and can be very repetitive with questions and some echolalia.
He also has a very muffled, unclear speech, doesn't sound many consonants and mix them up.

DS has a few rituals (he has to open/close doors, turn lights on, press tv/dvd buttons, stacking up cushions, putting 2 spoons of choco powder in his bottle,...all of which MUST be done by him in a certain way or we have tears and tantrums), some stimming (mainly vocal), and a bit of hand /finger twirling when he is upset or too excited, and some sensory issues (noises, bright lights, tactile, food)

His play skills are not age appropiate (EP said they are imature), he has little imagination when playing, he doesn't do symbolic pretend play and is also repetitive in how he plays. He doesn't like to join in group table activities at nursery, and frequently 'stares off' into space.

His social skills are fairly limited with other children, he can do the chasing bit and laughting and running with them , but doesn't know how to approach them appropriately, or join in the play unless someone helps him to do it. DS cannot do sharing, is obsessive with toy cars and trains,... and simply scream to show distress when unhappy at nursery about something. DS is a fairly anxious child on the whole.

DS has quite limited empathy, he will not come and cuddle when someone cries , he will look , sometimes ignore or simply say" what's matter!". DS has never ever expressed emotions verbally, never said 'i love you or even i like you mummy' (he can say i like motorbike though!) or even 'i'm happy or sad'.

DS will observe the other kids, imitates them down to the last detail and do parralel play.
Ds does give good level of interaction with professionals on a 1:1, allow them into his play, and will show some flexibility (although that can be on his own terms)
So mainly because he imitates so perfectly (too well! in my books, because that's his own way of socialing) and because he allow adults into his space and gives joint attention and some eye contact, i'm told by salt and EP...."asd kids just simply don't do that!", they both say DS 's issues are down to his speech delay and he may just have a few asd traits but not enough for asd.

I totally disagree. Am i right?
EP only spent 30 mins with DS on one occasion, and salt sees him one in a blue moon in a structured setting during salt therapy.

I know EP and salt are not qualified to make asd dx, and therefore shouldn't be saying he hasn't got asd. But they are saying it!
I am convinced their opinions will have a big impact on consultant's paed decision concerning referal to CAMHS.
There is nothing i can do about it.

I feel like telling the paed quite bluntly that i (and DH) believe DS has some form of autism and that EP and salt have not spent enough time with DS to warrant their assumptions.
Would that be a foolish thing to do.....???

I want these people to listen and take us seriously.

Sorry , rant over.

Oh MSB, Huge hugs to you. Am so sorry I haven't replied to your email yet, was on my list to do tonight when the kids were in bed. Have had a mad couple of days

Anyway! I don't feel I can comment all that well on what to say to paed's etc because I haven't been down that route yet but I know others will come along with all their experience and wisdom to help soon.

I can only comment on my own views and thoughts so pick out the bits you think help and ignore the rest . I have spent months battling over the issue of is he/isn't he ASD and filling in questionnaires, ticking boxes that some days result as ASD and others not. Why?! I have no idea because when I actually stop and think about it its irrelevent whether he has ASD or not. What is relevant and far more important is noting what his difficulties are, do they impact his every day life & if so, get help.

You have made a good list of things there that are obviously worrying you. Maybe it would help to go back through them and highlight the ones that cause clear problems in his/your daily life and the ones that have potential to cause long term difficulties.

When you see the paed I would say that is a good place to start.

As I say, I really don't have anywhere near the amount of experience and expertise that other mums on here have and I am always nervous when posting that I am going to say something wrong and get flamed . However I wanted to reply to you properly on here because I consider you a friend . Will drop you a fb pm and maybe we can have a meet up

Thanks Barmy.

Your suggestion has been helpful, i have never thought before of presenting the 'facts' in a different way would indeed be better.
I mean usually i merely say "DS does this or DS doesn't do that,...and i'm concerned!"
So this time i will say "DS struggles and has difficulties with this and that" as opposed to the above.

The reason i want them to look into the asd issue and get dx is because they tend to think that speech is the issue with DS. Ok it is an important one especially atm. But the social side of things is important too. And will become more and more prevalent when DS will start school, he needs help with that too and it is more or less ignored atm.

One of the target on his IEP is : ' help DS to extend and develop his imaginative play' (or something like that , haven't got iep under my eyes)

Another is : ' improving sharing, and participating in group activities'...

In my eyes , a simple IEP isn't going to do the job. He needs more than that.

Teacher told me at the morning meeting that DS was becoming slightly agressive with other children (he never has been before), and is having regular tantrums since the begining of term.
She also repeated it to EP.
I don't want things go bad before it's too late.
In my opinion there are focusing only on the language and not on the rest.
If he ever get an asd dx , they will or should address the whole of his needs , shouldn't they!? i'd hope so anyway.

Barmymummy, I think you are right. Meeting needs is absolutely the key issue. The problem can be that, sometimes,not always, those needs will not be met without a dx. I think this can be the case in school in particular and this is why the whole thing can become so frustrating.

See your point. In that case maybe its worth saying to the paed that whilst you acknowledge DS has a speech problem, you are worried that his speech is clouding everyone's judgement and that x,y & z are also issues that he struggles with alot and you don't feel they are being given enough attention.

If the paed is worthwhile he will listen to the whole picture you present. Maybe leave his speech issue until last and list the other things first?

Mysonben- from reading your threads your ds sounds so much like dd2 and also similar to my dd1 (both high functioning autism/aspergers). Dd1 does a lot of imitation (great at copying voices), dd1 allows adults into her space and can maintain good eye contact (dd2 can also do this). Both my dd's have imagination and dd1 plays well with others.

When dd2 started nursery i was told that she might just have a speech delay which can also show ASD traits, dd2 was clearly autistic (flapped her arms, held her ears, has sensory problems), her speech has always been her main problem and even though she has a dx of ASD people still keep telling me that she might just have a speech and language delay .

Yes absolutely.
I need to write a little list of important points concerning the other things other than the speech issue (which they are addressing properly finally with the language unit).
And instead of simply listing the odd things DS does , i will highlight his struggles with the social side of things.

I mean i don't really care if DS stacks up cushions in a certain way each day, that isn't a problem in itself.
The fact that DS cannot approach another child and say "hi i'm B....you want to play?" but instead runs over making the same screetching noises time and time again, is more of a bother.

Thanks for the advice.

Yes exactly. Stacking cushions, putting 2 scoops of powder in his drink, loving tin openers are not issues that are going to stop him learning.

Not being able to socialise, join in with group play, having sensory issues etc all are though. Those are the things you need to make headlines on your summary sheet iykwim.

Yes marne, people only see what they want sometimes.

The way i look at it is to have asd , you must have some impairment within the triad , right?
And DS does, he has an impairment with his speech/communication, he has an impairment with social skills i mean i'm not saying he completely lacks social skills but they are imature and not always appropriate, and he has milder issues with rituals, repetitive behaviours when playing, sensory issues,...
So that's the triad isn't it?

I want them to stop telling me all his behaviours are caused by his lack of clear speech because it simply isn't true and i don't want to be fobbed off because they want to prevent a dx so they don't have to give a statement and more funding for him.

...i might put a brand new tin opener in his xmas stocking!!! He'd love it!

mysonben - I'm confused - I thought your DS had a formal DX (i.e. report from the paed in writing?)

Don't be put off - sadly the agenda of some professionals is to keep budgets down and fob off people they think they can fob off. If you don't have the dx, ask for a second opinion, in writing from another paediatrician - verbal is useless as no paper trail. Point out that early diagnosis and intervention is crucial for the best outcome in adulthood (think that's a quote from Attwood?!)

Also, don't be fobbed off by EPs and SALT. I think it is reccomended that all ASD kids need SALT to support social communication - so go down this route rather than arguing about his actual vocab etc. Also, is the assessment you had by the EP from pre-school panel? You don't have to wait for their assessment to get statementing underway - apparently they like people to think you do... and the EP assessment for PSP is not the same as the one for stat assessment eiether. Contact IPSEA for more help advice with this. Also, if you have got a formal dx, start the statementing process asap. That way you are in control and you have a right of appeal. Again there are standard letters on IPSEA.

HTH a bit.

You're right social skills are really important. I went to a talk about this recently (ABA talk) and talked about 2 twins with ASD - one did well academically but as adult had depression and mental health issues / a loner. The other had more severe learning difficulties, didn't do well academically but had genuine friendships and was married. And said which life would you want? Of course we want our children to be happy and that means having real genuine attachments. Speaker said NO evidence that children with ASD make friends just by being exposed to other children, you have to teach social skills. Also everything I read says start with 1 or 2 children not a large group.

Do you know anyone you could ask to bring their child over for a playdate (ABA are big on these) do a structured activity ie make something - and keep it short to start with eg 1/2 hour. If you post something about playdates I'm sure some of the more experienced ABA crowd will be able to advise how to run these, then you would feel you were doing something yourself. We're just starting to look at playdates (sorry thats really American but I can't think of a UK equivalent) but starting by using DS brothers, but have been lucky in that our NHS Clin Psych has been very keen on social skills from the outset eg turn taking activities so nursery do things like roll a ball back and forth (he suggested we count backwards so DS knows the game is going to end!) and once doing this with adult introduce one (carefully selected) child. Like anything with our kids its small steps. Expecting them to make friends in a big group is silly, many non ASD adults struggle to make conversation in a room of strangers. Our clin psych said on day 1 that he was looking at DS and wondering who would want to be friends with him in a few years time and that as he used people as tools and discarded them once they had done what he wanted this wasn't going to make him popular and he had to learn that he had to stay in a game for a set period and not just walk off.

You can also insist on social target to go on IEP eg within x weeks B will do a turn taking activity with another child for x minutes without adult input. Something you can measure.

The ABA speaker said traditionally social skills were ignored because they are hard to teach, its much easier to do a bit of speech work, or academics. I asked him after the talk if we could get ABA into DS nursery how much training would it take for the staff to be effective at teaching DS social skills and he said 3 weeks! Well most TA's will have been on a 1 day course if they are lucky. So i think there is a big lack of training on the social side which is why you often see children in mainstream playing with the 1:1 TA but not having any genuine friendships. So I'd start by saying you want social targets on the IEP and really quizzing them about what training staff and you are going to get on this.

Ok I just found this about playdates, its a bit American but gives some advice: susanetlinger.typepad.com/the_family_room/playdates/

My son did the ADOS test and i was told if they went on that he wasnt autistic,but because they could see something he was refered for a longer assessment a few times a week for few hours a day and he was dx in sept. my son can speak very well,and has eye contact and i was told his autism had been missed because he has good communication but with longer assessments ive been told he has more severe problems socially and emotionally also that although he speaks well what he says isnt always apprproiate,would it be possible for your son to be assessed over longer periods of time?
Getting a dx was very important to me as now i feel like im being listened to.

The derkinsdame, No DS hasn't got a formal dx from the paed.
I must have written things in a confusing way, let me explain.
We have been verbally told by paed "i believe your DS is on the autistic spectrum, on the 'mild' end of the spectrum,..." she went on to explain the huge spectrum with the high-fonct. and the low-fonc.
When we got her first report it said in the conclusion words for words "B does have speech and language delay, he also have some social interaction problems and obsessive behaviours and i discussed with (B's mum) about autistic disorders".
We had a review and a second report again highlighting his speech , social and behaviour problems.
And finally got a letter advising us that paed had discussed about DS at the city autism liaison meeting and that all had agreed that DS "presents with some autistic features", and he was to be reviewed by consultant paed for decision to refer to CAMHS.

Also Bibic did GARS.2 test and DS scored 124. Bringing a likelyhood of asd of 95%.

That's it. Lots of mention of asd but no formal dx.

Oh ffs, - give em a kick up the arse!

Oops, sorry - wrong thread .

Although reading it it does sound like someone needs a kick. All this messing you around nonsense!

Starlight, "From my own research I have concluded that imitation is a very enhanced skill in HFA as it is the only way they know how to 'fit in'."

You have taken the words right out of my mouth!
That is 100% true.
The way i see DS imitating/mimicking others in such 'perfect' ways isn't right in itself.

And my sister with whom i'm often at loggerheads said something to me only a few weeks ago as we both were visiting mums with our kids.
DS was constantly imitating what her DS and DD were doing, laughting in the exact same way when they laughed,...

After a couple of days, my sis said 'it is amazing how B always copies my children, i get the feeling he does it because that's the only way he knows and feel confident in his interaction with them'.

I was !!! My sister of all people had seen that DS 's imitation was his own way of socialising, because he hasn't got the ability to do anything else to fit in.
For once she was spot on.

mysonben - I think a snotty letter is the order of the day. Write to the paed, copy the BIBIC report, and ask that she assesses your son as you think that it is now time for a formal DX to be made in writing, as all evidence is pointing towards that eventuality. If she refuses, ask on what grounds. Do you think Bibbic would support you? Could you ask them to do a letter to the paed?

Where we live children can be referred to a Children's Assessment Unit which is a nursery based inside the hospital. They have 3 or 4 children at a time for 3 hours a day, 4 days a week for 4 weeks. During that time they are seen by physio, OT, SALT, Educational Psychologist and the nursery nurses note down all that they see. The Educational Psychologist is the one that makes the decision about ASD.

We were also told by SALT that she didn't think DS had ASD however the psychologist thinks that he may have and she is going in to his nursery to spend 1.5 hours with him to see what she thinks and we also did a 2 hour interview type thing without DS there where she asked us what he was typically like.

Thank you for all your replies.

Starlight, i didn't know we could ask/get a 'working dx'.
Is it like a letter stating ds has asd, but is waiting confirmation or something like that?
I could see how it would be useful for a statement.
Because i get the feeling they think once DS get the benefit of the hours of salt from the language unit everything 'could' be resolved..... i think not!

thederskinsdame, why do you feel i should send a snoty letter to paed then? Do you think they're fobbing me off and stringing us along?
I must say i find it irritating to get reports stating the obvious and of letters saying 'autistic features' and still hearing from EP it may not be asd because he imitates well and gave her good attention!
But then again she haden't read a single report on DS before seeing him! and
I am awaiting the arrival of the bibic report and intend to show it to consultant paed at our next meeting in 2 weeks, and also expect for them to refer ds to CAMHS for proper dx assessment.
If they don't, i shall not be happy!
But as it is less than 2 weeks wait., i'll hold it until i hear what they are going to do.

Thank you for all advice.

By EP do you mean Education Psychologist? I thought they were qualified to make a diagnosis? Is that not the case? If they aren't who is?