ADOS test done - long post!!

[debs40]

This was a weird one. Long post sorry!!

Both of us turned up as CAMHS always ask for us both to be there but then got told only one of us could go in the room. This was a pain as DH had taken time off work and I had organised and paid for childcare for DS2 for the day.

When the two therapists came into the waiting room, we had just got a packet of crisps for DS who had come straight from school and was starving and nervous ? he likes to munch when nervous. They were not happy with this so we waited while DS ate some crisps in the waiting room. The psychologist then tells me to leave the crisps in the waiting room. I say I?ll put them in my bag. She grabs them and says ?leave them on the chair, they?ll cause a problem?. I snatched them back and said? they won?t?. She says ?they will?. I say ?I know my own child, they?ll be fine, he?s 7 not stupid?

Great start!!

Test goes quite well in that they managed to engage him and got a good picture of him.

He was at a loss with the ?what makes a friend? questions ? they play with you. As for the marriage question, forget it.

He couldn?t explain feelings. He knew what made him mad/sad etc but not how it made him feel. He had no idea of anything he could do to irritate someone else.

He said he never felt lonely and couldn?t see how anyone could be??

He stumbled on the make-belief brush teeth ? ?I haven?t got a tooth brush? and it had to be explained that he had to pretend. He did it half-heartedly.

He managed to do stories with toys and random objects but there was quite a lot of copying of the psychologists stories.

When given a task to play by himself, he drew. A spinning top was placed by him and spun by the psychologist. He just tutted and knocked it away and continued with his drawing.

He got up and lolled around a bit but mainly stayed focused

He explained what happens after school ? describing a routine.

He was able to explain a story from the pictures but was a bit rubbish on describing the faces

He kept looking to me for approval but I wasn ?t supposed to say anything so I smiled lots and gave thumbs up!

All in all, a pretty accurate reflection of the complex chap he is.

I asked if they would let us have the results. No. I asked why? They were pretty patronising trying to explain that it is a multi-disciplinary process and parents get too worked up about the results (although the head of service told me that it all rested on the results in DS?s case). I get the feeling they don?t score them and just make a decision when they all sit in the panel watching the dvd!!

I did get an apology about the crisps though which strangely didn?t disrupt the process!!

Why you have to be spoken to as if you?re dysfunctional or stupid I don?t know!!

Mrs Bean, you are fab.

That's really helpful, mrsbean78.

To be honest, I think DD has ASD traits, but caused by her brain malformation rather than pure ASD, IYSWIM.

My concern is that she has barriers to communication & understanding, which are being written off as GDD.

Hi Lou

Do you mind me asking what her current dx is with Paed e.g. re: brain malformation?

Don't underestimate the potential impact of GDD on communication and understanding. Unfortunately, public services often reduce services to people with GDD because the level of intervention possible publically isn't consistent or intensive enough to make a difference.

Unfortunately, this has led to many SALTs actually genuinely believing that SALT for children with delays in both language and cognition does not work. Certainly, one of my superior therapists who is brilliant in so, so many ways believes this and we have discussed this..

An article that goes against this general belief can be found here and used as evidence, if you need it:
lshss.highwire.org/cgi/content/abstract/30/1/61

If there is a suggestion of LD of any type and your LO is verbal you may well find that public services are ill equipped to help you unless there is a particularly progressive pathway in the trust with regards to LD/GDD.

In this case, I'd say that a full private assessment is the way forward.

I agree re: instructional control. When I started as a SALT haing been an ABA tutor, I found this very hard. I couldn't see how anything was feasible in one hour - it used to take weeks to get reinforcers fully established on 40 hour a week programmes!

Oh but of course, Starlight! As a new SALT, however, I was used to having that relationship with kids and it took a lot of getting used to that I was no longer the 'tutor/therapist', I had to consult.

Having said that, given that I'm in the position of consulting both to parents of kids with ASD and with SLI, it's far easier with SLI and/or kids with ASD who are 'learning ready': given that teaching parents how to establish instructional control is not really in my remit, my options with kids who are whirling around the room and non-responsive/disengaged are slight. Usually would start with basic trying to engage the child/communication temptations in this instance but hard to demonstrate this effectively in that too, too short hour. Which is why I shifted my role into diagnosis of the over-8's, I have to say.. I found it too difficult to work effectively with children with limited verbal skills within the allotted time frame. Some find this easier..

I'd personally love to come across a family who had an ABA team, say, and come and watch their sessions and make suggestions etc.. but haven't (so far) had the opportunity where I am (just hasn't come up). I'm comfortable now with the idea of being less of a key player in the intervention.. just wasn't always so!

Though I will say, the difficulty with SALT these days is that a great many SALTs have never been in the position to provide 1:1 intervention.. which makes consulting infinitely harder. I don't think I learned how to be a SALT before working in the Language Unit and most of what I learned about how to work with kids with ASD I learned as an ABA therapist.. how do you teach someone else to do something you haven't done yourself, and how do you learn how to adapt it to an individual if you have extremely limited time to do so? Fault of the NHS system and overstretching of resources - US SLPs have 3 sessions a week with a professional, I think! Unheard of even in very good provisions here...

mrsbean78, DD1 has widespread but subtle cortical dysplasia. Doctors don't really know what to say about it, except that 'everything is a little bit squiffy'. Some areas are malrotated, lacking symmetry, there is some thickening and thinning, a little grey matter where white should be and so on.

She carries a GDD tag, but a referral letter to opthalmology said 'Moderate Learning Difficulties'. She also has epilepsy.

I, personally, have an issue with the term 'delay', because it indicates that the child is simply operating at a level short of their chronological age. So, 'normal' for a younger child, IYSWIM.

Well, I have a 2.9 year old DD2, who is progressing with beautiful sentences, sounds coming nicely, with normal immaturities, fluency steadily rising, concepts enlarging.

Then I have DD1, who is 4.6, and sounds far from 'normal', even for a younger child.

The SALT did a ReynellDLS in December, at 4.0, and she came out on the 5th centile in perfect conditions (silent room with just therapist and myself).

She did the CELF 2 with her last week, just the vocabulary section, and she scored a raw score of 12 (borderline 11 or 12, tbh) and a scaled score of 5 (borderline 4 or 5).

Sounds like you have had a very traumatic experience, perhaps conducted by a inexperienced team. Although testing is important as it may open doors to extra help later on and can be viewed as irelevant. I hope that does not sound flippant but what I mean to say is it is probably more important examine his impairments from how they impact on his life and teach him coping skills now! The scores can come later and the the treatment recomendations are probably likely to be the same anyway. There are a number of books available on the subject and for me the most significant was written by John Clements and Ewa Zarkowska. Google them and see what you get. If you get no luck, let me know and I will try and find my copies.

Hi lou - wrote an ultra long post yesterday but computer crashed, now in Ireland taking baby ds to see his gran.. will write again when I can.. not ignoring or bowing out of conversation

Enjoy Ireland and thanks for all the input so far.

I guess you are right. I see it all the time

Finally - I found the thread again! It feel off my 'threads I'm on' and I was lost.. couldn't remember where it was, so I hope you see this lou

"I, personally, have an issue with the term 'delay', because it indicates that the child is simply operating at a level short of their chronological age. So, 'normal' for a younger child, IYSWIM."

This is the crux of things. Delay is a terrible term because it implies catch up. Some children with delay do go on to have typical speech, language and/or cognitive skills later in childhood, but the majority will have some residual difficulties and some will have more persistent difficulties.

The issues are threefold - 1) that, well, even in the most amazingly articulate population ever, someone has to be on the first centile and 2) our current state of knowledge about language development is imperfect and no one can adequately predict whose delay will resolve and whose will persist and 3) the system cannot cope with the sheer quantity
of children with delays so it fudges the issue with vague terminology.

I've just been speaking to a colleague who has recently gone private as she was sick of the system. She is currently having to renegotiate her own understanding of service.. because when you are IN the system, you begin to believe that language delay is not a priority and can't really be be impacted upon by direct therapy. To an extent, this is true - even 2-3 sessions a week in some sort of SLT utopia won't make the difference to language development that a constant onslaught (!) from trained and motivated parents can. No one can make the difference to your child that you can BUT and it is a big BUT changing the way you communicate with your child and/or learning to support their language and communication development is HARD and the NHS system does not allow for sufficient support to enable such a sea-change.

I can't remember where I saw it now, but a few years ago I was looking at a budget breakdown for some trust where they showed the costs of various different interventions. SLT is a hugely costly intervention in NHS terms because the sessions are typically long and improvements are extremely slow - contrast this with, say, an OT assessment where you change the type of kettle a person is using and - hey presto! - they can use a kettle. SLT is more inexact because the variables in language and communication are so extreme and individual and not only is the research base inadequate, it tends to be quite flawed also (very hard to replicate/generalise).

When it was more one to one and behavioural (like ABA for autism, say) it was more 'effective' but the waiting lists in clinic-based trusts were often in excess of two years. The switch to consultancy was to try to ensure a more equitable service but it diluted what we do. Only a few of us are now so lucky as to be in a position to work 1:1 with the same students on a regular basis.. and because of this a lot of people are becoming deskilled. How do you consult to someone about something you've never been allowed to do?

So.. in your case, I would say that because of the cortical dysplasia and the GDD, NHS SALT is most likely to assume (incorrectly I believe, but it's hard to prove) that the only support that your LO needs is environmental adjustments e.g. more visuals in the environment, adjusted language input to improve her processing etc..

Your choices are a) fight it (but be aware that the evidence base isn't fantastic as it doesn't attract much funding and so isn't very robust) or b) get a private SALT who you feel will treat your daughter's language and communication issues based on how they present and what the functional/language needs are rather than react (even unconsciously) to her needs as being low risk/low priority.

HTH and sorry about the delay..

fell - not feel!