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!!

I think we all (including perhaps doctors) forget what these dx's are - we think they are more than they are.

All they are is attempts to classify the thousands of children that present with problems into disparate groups according to symptoms. I started reading a book on comprehension problems ("uncommon understanding") aimed at professionals. It kept using phrases like "some people think it woule be useful to introduce a such-and-such category".

We're used to being able to pin down so many things with our medical models now, and I think we overapply our medical model.

So we look for objectivity or claim to act objectively to a degree that's beyond what's appropriate.

I agree.

The more you know, the less the idea of 'diagnosis' seems satisfactory.

Autism is peddled as a 'medical' condition and of course, in terms of it being a developmental disorder, it is.. but there are crucial differences between it and say, cancer. You can't test for it so you are relying on 'symptoms' vs 'signs' (e.g. people with diabetes are often alerted to their condition by increased thirst/weight loss etc which are symptoms, but the diagnosis is done by analysis of urine and the stick going the right colour e.g. a 'sign'). As the 'symptoms' are assessed by observation of behaviour, it is inevitable that parents will know more and be able to challenge much of what is seen in an assessment process.. because the objective, 'expert' opinion is based on a snapshot (regardless of length of process etc) while the parental view is based on considerably more experience and consideration of the same data (so to speak).

We don't have 'signs' for ASD, yet... and if/when we do, it is likely that we will discover that there is no monolithic 'autism' and that environment and individual personality and all manner of other factors impact upon the 'symptoms' that are seen.

For my MSc, I did a case study on an extremely complex little girl who was stumping all professionals both in terms of diagnosis and intervention. I threw the book at her in terms of assessment - we did CCC-2's with everyone working with her, both parents etc; ADOS, ADI, CELF, WISC, informal stuff, videotaping interactions and looking at variables between communication partners, narrative assessment etc etc.

At the end of it all, I concluded that diagnosing her was totally irrelevant. She is in a Language Unit and has good support (daily in class with two others, pull out three times a week with at least 2 sessions from a SALT) from a team designated outstanding by Ofsted who can tailor their interventions to her on an ongoing basis based on what she needs - it's all about creative problem solving and knowing enough about general language and communication to be able to troubleshoot.

The issue is not diagnosis - it's that diagnosis = pathway to funding in the current system. It would be far better if more money was spent on quality interventions than lengthy processes involving hundreds of people lasting months and months and involving pseudoacademic rambling about how many angels can fit on the head of a pin. The stuff I read about 'people with autism..' makes me laugh.. 90% of the time it's more complex than that.

The difficulty is that diagnosis = pathway to funding. That is the issue.

"The thing is though, that the significance of this is overplayed. A stroke of a pen (or not) can have a huge impact on the life of a child and their family."

Definitely agree there Starlight. The boy who went for dx with ds and was considered off the spectrum was eventually given a dx at age 13 (10 years after assessment)
Bearing in mind in our LEA there is no autism specific support for any child without a written autism dx and an autism dx also carries weight in terms of how much support in mainstream a child secures.
It is hardly surprising that the boy ended up doing the rounds of mainstream schools getting excluded and moving on and eventually ending up out of education altogether and indulging in petty crime and drugs.
He is well on course for a life in the penal system whereas with the dx and the sort of support ds has had it could have been a totally different story.

You can always challenge anything.. but it is tiresome.

In practcal terms as someone who is not a parent, I will say it is almost impossible to provide anything other than generic intervention in schools without units, though. I work in three units attached to mainstream schools and there, individualisation is achievable, particularly in one which has good staffing. There is virtually no time whatsoever in a mainstream school to provide any type of quality intervention in the case of complex communication disorders. I do a weekly session in a school that pays for my time out of their budget with some kids with severe, severe difficulties (I'm talking about secondary kids here who can't understand an instruction that a typical 2 year old can, trying to struggle through mainstream classes in history/geography etc) and I just can't provide the same level of intervention as elsewhere because of timetabling constraints etc. I am perfectly capable of doing a highly individualised programme but there's little point in these situations.. if I can do one minor thing that will be taken up and followed through on consistently, I will do that rather than provide sheetloads of individualised strategies because they won't work and will be stuffed in a drawer somewhere, even if the staff are very keen and motivated. The time just doesn't exist in the week for it..

One of the reasons that, say, 'gold standard' interventions with good research evidence behind them such as ABA work for kids with ASD is because of the consistency and pervasiveness of the intervention. I've been involved in delivering all types of intervention and the key factors to success/failure are individualisation, consistency and follow-through all of which you can achieve on a 40 hour a week programme with a dedicated team of staff. However, in our area, the cost of ABA provision from the most popular provider (who are very good) is about £50K per child per year.. and I know full well that if you were to provide ABA with the same funding constraints as other interventions it would quickly fail to meet outcomes. In my early days as a SALT I really, really tried to incorporate what I had learned from ABA in advice to schools but I quickly learned that this was highly ineffective.

The whole thing is so hard and so frustrating, and obviously much more so for all of you who are living with it on a day to day basis. I can imagine it is exhausting.

Sorry! It depresses me too but obviously it has more personal bearing on you.

If my son turned out to have ASD I would probably go the ABA route.. and I would fight for that.. but I do understand why public sector professionals feel frustrated by ABA professionals telling them they're useless! I've been in both positions and before I qualified, I would have been firmly of the opinion that everyone in the public sector was The Enemy.. but when you're in it, and you see the extent and breadth of the need out there, you begin to see the impossibility of say, all students with autism accessing 40 hour a week services with high quality professionals advising etc. I think in the States, where they pay high premia for health insurance, there is better funding.. but here, it's impossible for the NHS to offer that level of provision equitably. So it's watered down services for everyone but the very few..

There have recently been negotiations on the future role of SALT in our units and I will find out on Monday if I am to be made redundant from this part of my job in August (this happens every year but this is the first year we have received formal written notification of the negotiations and there has recently been a change of leadership in the LEA so it's not looking good ). This is despite the outstanding judgement from Ofsted and the good attainments of our students.. I think it's because of the argument that it's not 'equitable'. Even within our settings, teachers we work with just don't get that an SLI requires a different level of provision to mild learning difficulties and nothing we will ever say will change that.. we've tried, and we keep trying!, but it's hard to make people see complexity and purse-holders in particular seem to see broad strokes of the brush vs the fine details.

I know it's a poisoned chalice, but take heart in the fact that at least there have been decisions in favour of ABA which will support you. There's no such recourse for parents of kids who are, say, hearing impaired or have developmental verbal dyspraxia.. it's a nightmare!

MrsBean - you are a beacon of honest professionalism.

"The issue is not diagnosis - it's that diagnosis = pathway to funding in the current system." You are right. Of course, a dx doesn't automatically equal educational or other help but it does help you on the way.

I wouldn't need to 'label' my son if he were at home with me all the time. He is just my son. However, in order for me to get others to understand him and his needs, particularly in school, you tend to need this label or a label of some sort. As much as people say support is 'needs not dx' based, it isn't true and there is always this underlying doubt about what is needed in terms of support from teachers etc unless you have that label.

It's harder for example for a teacher to deny help saying 'he's fine there's nothing wrong with him' when you have a report or dx which says that helps is required.

It is so disappointing that professionals can't all be as honest as you. The ones I've dealt with so far have been very arrogant about their claims of expertise and accuracy and this makes me doubt their knowledge! The trainers I spoke about were far more ambiguous and certain about everything, acknowldeging the huge variety between children, which I actually found comforting and reassuring if that makes sense.

Anyone who can claim to be 100% accurate about any of this business does not know as much about it as they should!

Mrsbean....off the point a bit but I am looking for a SALT assessment for DS as his assessment as part of the dx process was very rudimentary. There are lots of private SALTs out there but what is the best way of identifying someone with ASD expertise?

Gosh I hope you aren't made redundant Mrs Bean (unless of course you don't want to go back!)

No news yet on job.. stony silence all day.. can't work out whether that's a good or a bad thing. Negotiations ongoing maybe? Or letter in the post .

Starlight, I'm also very dubious about some ABA providers touting it as 'recovery' (including the very reputable provider who trained me in ABA and that I believed was very, very professional back then) -particularly when it's marketed as 'recovery' if you're willing to give your life over to it as a parent and pay 50K per annum for the privilege.

debs40, I'm a bit clueless about how to navigate the private system. Word of mouth? You can try www.helpwithtalking.com which is the website of the Association of Independent SALTs in Private Practice (or something like that) and then ring and see who you click with?

Thanks Mrsbean. I'm sorry you're having all this stress and I hope you get the news that you want very soon.

Thanks for posting on her. Your insights have been invaluable!

I think you have a point there Starlight re: the developmental side of things.. I have sees 'conversational programmes' when conversation is developmentally appropriate.

The reason I think conversation is so difficult for kids with ASD goes right to the heart of autism, really.

Conversation involves huge amounts of reading the other person and integrating real-time observations from both the linguistic and communicative levels and marrying these with previous history with that conversational partner. I think, to be honest, that the reason ABA doesn't work with conversation is that the discrete 'behaviours' are difficult to isolate as well as being idiosyncratic and variable, and also there are many, many different behaviours happening all at once in a dynamic with the conversational partner. So, when you talk about teaching something by rote to facilitate incidental learning, the behavioural tack is often 'off' with the teaching.. because you can analyse a specific conversation to death but the behaviours that are taught in relation to replaying it/participating in it are, as you say, surface behaviours.. so it's doomed to fail because of a lack of an adequate foundation.

Even if you can teach the structure of a conversation and you have a kid who has some genuine social motivation (some do, some don't), it is typically extremely difficult for kids with ASD to operate on this level when you 'speed it up' as it is in everyday communication. The rules change.. because they are fluid and dynamic. This creates a situation where kids get very little natural reinforcement from successfully carrying out 'the rules' in everyday life and it can be frustrating.

To give an example, I remember the boy I worked with last on an ABA programme using his 'programme' beautifully in a situation where it was appropriate.. and he loved it for the 2-3 minutes it all clicked and worked (I wish I could remember the specifics! Grrr.. it was something to do with commenting on what peers were doing and he did a lovely contingent response about cotton wool being like clouds.. it was brilliant) but then they moved on and he no longer had 'the answer' and he flailed about a bit and then had a meltdown..

In my secondary unit, we've looked at the structure of basic turn-taking in a group situation using different coloured paper cards representing people's turns and looking at what happens in conversation e.g. if you interrupt..(see www.socialthinking.com - Michelle Garcia Winner - she's in the UK this week but I can't go to the training, sadly!). Some students find this method really good and will say things that show that they are understanding the teaching.. some don't.. I still wonder how generalisable it is.. though I'd like to see this type of metacognitive teaching in ABA programmes for much older children.

I personally don't know the answer re: 'conversation' but I guess, kind of like you're saying, I probably wouldn't work on it with younger kids (pre-secondary, for most) as I think it isn't particularly effective and even if it works in the short-term based on careful behavioural analysis of the communicative environment for that child at that time, it will be very difficult for extremely specific programmes to generalise.

At university, I wanted desperately to look into teaching conversation to 7-8 year olds - can't remember my specific question now - but my tutor just said that look, we don't know enough about how it works.. that's a lifetime's career of researching, not an undergrad dissertation!

I am doing my MSc at present (work are paying so the dissertation element is a very boring evaluation of a training package) but I do hope in the future to become involved with research in this area.. specifically, I'm actually interested as a starting point in qualitatively examining the interaction/conversation that occurs in ADOS assessments and how this impacts upon scoring..

but that's a story for another day

My first sentence makes no sense! I have seen conversational programmes written where developmentally inappropriate - apologies!

It's all very interesting to me. DD1 has a speech delay/disorder (NHS SALT insists delay; I, ed psych, paed, portage, etc all think disorder).

I have found that I naturally aid 'conversation' for DD1. So, when we are waiting to start pre-school, a child might say "Hi, DD1". And I say "Say hello, DD1". So she does. The child might then say "Look at my toy dog". DD1 doesn't really say anything. So I instinctively say "DD1, you could say 'that's a lovely dog, he's cute.'" or whatever. She does. But is that the right thing to be doing, or should I just leave her to it?

lou031205.. I'm surprised that your SALT is saying gelay and others are saying disorder? Usually (in my experience) it's the other way around. Do you think there might be a difference in what is understood, here, by disorder? We have tremendous difficulties trying to get Ed Psychs and Paeds to recognise speech and language disorder, they will tend to put difficulties with language down to learning difficulties etc and dismiss the need for specific interventions.

For a start, I will say that I truly believe that only a SALT can diagnose speech disorder, speech here being the sounds that are used in individual words and that make someone easy or difficult to understand. Sometimes, a child can be extremely difficult to understand in the preschool years but still be following a normal pattern of speech errors.

Here is a checklist we look at when determining disorder vs delay with relation to speech:
*
GENERAL FEATURES
Reduced babble
Feeding difficulties
Prosodic difficulties
Resonance difficulties
Inconsistent production of words
Groping behaviour
Increased errors with increased performance load
Delayed processes
Disordered processes (2 or more)
Difficulties with sounds in isolation
Imitation worse than spontaneous speech
Poor oro-motor skills
Slow and laboured speech
Poor phonological awareness
Poor generalisation of therapy targets
Very slow progress in therapy
Only responds to specific therapy type
Doesn?t respond well to breaks

SOUND FEATURES
Fronting
Stopping /s/
Stopping /f/
Stopping all
Prevocalic voicing
Weak syllable deletion
Cluster reduction
Assimilation / consonant harmony
Reduplication
Final consonant deletion
Metathesis (transpositions/reversals of phonemes) (e.g cat > /tak/)
Initial consonant deletion
Glottal substitution
Backing alveolar plosives/nasals
Backing range of sounds
Lack of systematic error patterns ? one sound substituted by range of sounds
Sound preference
?favourite sound?
Errors not explained by consistent error type ? error specific to particular words
Vowel distortions
Use of non-english sounds
Voicing inconsistencies
Imprecise articulation
Phonotactic structures significantly affected
Intrusive consonants
Denasalisation
*
Quite a few of the above features are also present in delay, but beyond 'final consonant deletion' it becomes more disordered. However, this fine-grained analysis is what you learn as a SALT - I would suspect most other professionals, with all due respect, wouldn't be able to comment on or recognise many of these features e.g. vowel distortions or phonotactic structures etc.

If you are talking about language disorder
e.g. you think that there is a disorder in how your dd understands language or can combine words into sentences, then it's a bit less clear, but generally the defining factor for a SALT is that there is a significant gap between language abilities and other areas of learning combined with these features below (while recognising that there is sometimes (but not always) quite a lot of overlap between say, the language of someone who has autism and someone with a language disorder:
*
HISTORY
First words late
Slow to join words into phrases
Other milestones reached at appropriate ages
Shows communicative intent eg gesture/pointing
Family history of speech/language/literacy/educational difficulties

EARLY LANGUAGE SKILLS
Use of jargon
Echolalia &/or learnt phrases
Slow to develop verbs
Difficulty with negatives e.g. no, not, don?t

DEVELOPING LANGUAGE SKILLS - RECEPTIVE
Responds well to visual information
e.g. gesture/sign/picture/symbol
Expressive skills in advance of comprehension
Responds to key words rather than whole meaning
Difficulties with word meaning (underspecified/mislearnt semantics)
Poor attention to language tasks with better attention to non-language tasks
Poor verbal memory when compared to visual memory
Poor understanding of time and sequence concepts eg first/last, before/after, sequencing pictures in order
Slow processing in language tasks

DEVELOPING LANGUAGE SKILLS - EXPRESSIVE
Incorrect word order/incomplete sentences
Continuing problems with verbs including use of auxiliary, tenses, subject-verb agreement
Remains telegrammatic despite longer sentence length
Morphological errors e.g tense marking, plurals omitted
Word finding difficulties, can consist of:

• non-specific language eg that one, thingy
• semantic errors eg snail becomes slug
• phonological errors eg microphone becomes microwave
• nonsense words

Pronoun errors or lack of pronouns (generally her for she, him for he, me for I rather than he/she or I/you confusion which are more typical of social communication) Lack of descriptive language (adjectives) Poor production of multisyllabic words in absence of speech difficulties. Talks around the topic, not always clear what the meaning is

*
Then.. well.. there's communication disorder.. and that can combine features from the above with all the features of autism...

but I've talked too much.

Re: the dog. Hard to say.. if your dd's difficulties are primarily down to social communication, your approach seems sensible. As modelling, it's also good especially as you are giving an option e.g. 'you could say...'. However, I wouldn't be convinced that insisting on her saying it (which you don't say you do) is a good idea unless I knew more about her and she was following e.g. an ABA programme with clear goals and a plan. However you do say she's in preschool and it's far from clear what's normal re: social commenting for this age group - they frequently fail to respond contingently to peers (although a higher level of failed contingent responding can be associated with language difficulties).

Clear as mud? It is a complex ol' job, really.. despite how it might look sometimes!

Here is a checklist we look at when determining disorder vs delay with relation to speech:
*
GENERAL FEATURES
Reduced babble - YES as infant, raised concern at 8 month check
Feeding difficulties
Prosodic difficulties
Resonance difficulties - I am always having to tell DD to use a 'big voice', either that or she shouts.
Inconsistent production of words
Groping behaviour
Increased errors with increased performance load
Delayed processes
Disordered processes (2 or more)
Difficulties with sounds in isolation
Imitation worse than spontaneous speech
Poor oro-motor skills
Slow and laboured speech YES, no fluency. Sentences are 'chunked'.
Poor phonological awareness
Poor generalisation of therapy targets
Very slow progress in therapy - never given any
Only responds to specific therapy type
Doesn?t respond well to breaks

SOUND FEATURES
Fronting - Lots of sound features but SALT says normal but delayed IYSWIM
Stopping /s/
Stopping /f/
Stopping all
Prevocalic voicing
Weak syllable deletion
Cluster reduction
Assimilation / consonant harmony
Reduplication
Final consonant deletion
Metathesis (transpositions/reversals of phonemes) (e.g cat > /tak/)
Initial consonant deletion
Glottal substitution
Backing alveolar plosives/nasals
Backing range of sounds
Lack of systematic error patterns ? one sound substituted by range of sounds
Sound preference
?favourite sound?
Errors not explained by consistent error type ? error specific to particular words
Vowel distortions
Use of non-english sounds
Voicing inconsistencies
Imprecise articulation
Phonotactic structures significantly affected
Intrusive consonants
Denasalisation
*
Quite a few of the above features are also present in delay, but beyond 'final consonant deletion' it becomes more disordered. However, this fine-grained analysis is what you learn as a SALT - I would suspect most other professionals, with all due respect, wouldn't be able to comment on or recognise many of these features e.g. vowel distortions or phonotactic structures etc.

If you are talking about language disorder
e.g. you think that there is a disorder in how your dd understands language or can combine words into sentences, then it's a bit less clear, but generally the defining factor for a SALT is that there is a significant gap between language abilities and other areas of learning combined with these features below (while recognising that there is sometimes (but not always) quite a lot of overlap between say, the language of someone who has autism and someone with a language disorder:
*
HISTORY
First words late
Slow to join words into phrases -YES
Other milestones reached at appropriate ages - NO, GDD.
Shows communicative intent eg gesture/pointing YES
Family history of speech/language/literacy/educational difficulties - I was investigated for low IQ due to speech clarity issues as a 2 year old. Turned out to have IQ of an 8 year old. Resolved by age 5.

EARLY LANGUAGE SKILLS
Use of jargon - Yes, uses "Bowleat", for eg, for food.
Echolalia &/or learnt phrases - Lots of these. "Easy peasy lemon squeezy" "Deal?" etc.
Slow to develop verbs - YES
Difficulty with negatives e.g. no, not, don?t

DEVELOPING LANGUAGE SKILLS - RECEPTIVE
Responds well to visual information
e.g. gesture/sign/picture/symbol - LOVES Mr Tumble/Makaton, uses gestures lots.
Expressive skills in advance of comprehension - Paed and I think so, SALT disagrees.
Responds to key words rather than whole meaning - ABSOLUTELY
Difficulties with word meaning (underspecified/mislearnt semantics)
Poor attention to language tasks with better attention to non-language tasks - NO, general poor attention
Poor verbal memory when compared to visual memory - Not sure
Poor understanding of time and sequence concepts eg first/last, before/after, sequencing pictures in order - YES
Slow processing in language tasks

DEVELOPING LANGUAGE SKILLS - EXPRESSIVE
Incorrect word order/incomplete sentences - YES
Continuing problems with verbs including use of auxiliary, tenses, subject-verb agreement
Remains telegrammatic despite longer sentence length
Morphological errors e.g tense marking, plurals omitted
Word finding difficulties, can consist of: - YES, will describe function and appearance instead of naming noun.

• non-specific language eg that one, thingy
• semantic errors eg snail becomes slug
• phonological errors eg microphone becomes microwave
• nonsense words

Pronoun errors or lack of pronouns (generally her for she, him for he, me for I rather than he/she or I/you confusion which are more typical of social communication) Lack of descriptive language (adjectives) Poor production of multisyllabic words in absence of speech difficulties. Talks around the topic, not always clear what the meaning is - YES

Straight off lou, I'm guessing the issue here is one of terminology caused by the GDD. I don't know anything about your NHS SALT but some services won't offer interventions for 'language disorder' in children who have GDD (as a diagnosis of specific language impairment (which is what many SALTs mean when they say language disorder) requires children, really, to have near age appropriate development in other areas. (Technical definition is -2SD on language relative to cognitive scores e.g. on a psychometric assessment).

Here, too, there is room to problematise that definition.. so just saying this in a general way.

As you are concerned about misdiagnosis I would be looking for a second opinion from a specialist in the Trust and/or a private assessment. I don't know your LO so it's hard to say more than this.. but it does seem worth looking into.

Are you more concerned about disordered language or a pervasive communication disorder e.g. like autism?

Some Paeds know a lot about language development, some know none.. so I don't really know how to read what the Paed thinks! Sorry!

Wow, I overdid the brackets there - but so many qualifications necessary .