ADOS ASSESSMENT - not at the moment diagnosis!

[claire4274]

Hi,

 

I'm not sure this is in the correct place, sorry.

 

My 8 year old son as a diagnosis of Sensory Processing Dissorder and we were also suspicious that he may also have aspergers or HFA. His school OT also believes this. Any way, we had an ADOS assessment in September last year and the results were that he does not meet the criteria for autism BUT if he does not out grow his behaviours then we may want to have him re-tested before he goes to comprehensive school.

 

My confusion is is that we were expecting a yes or no answer, not a not at the moment!

 

So I guess one thing I would like to know is has anyone else had a similar experience?

 

We are seriously considering trying to get a 2nd opinion as he is certainly not out growing any behaviours, if anything he is growing into more unusual behaviours. We are really strugglinh coping with his outbursts and temper tantrums.

 

His school OT has told us to start getting hidden video evidence of his behaviours (our son is perfectly behaved at school!) - he is very good at hiding his behaviours when he thinks he needs to.

 

Any help or advice would be very much appreciated.

 

Many thanks

 

Claire

[Special_talent123]

when i was 12 i was being tested for ADD, ADHD, Fragile X and aspergers syndrome but that was a no- aspergers didnt fit my criteria. but when i was 14 years old the nurse asked a paeditirican to test me for autism and they said yes because i had a speech and language delay as a kid

[Sally44]

http://www.autreat.com/dsm4-autism.html

 

The above is a link to the diagnostic criteria for Autism Disorder. There will be similar diagnostic criteria for Aspergers and PDD-NOS which are also on the autistic spectrum.

 

As you will see it is about meeting a required number of the criteria.

 

And it is about interpreting your child's behaviour against those criteria.

 

For example my son does not really hand flap. But he did spin alot, which is another repetitive behaviour.

 

He also did not have rigid routines. But if he was told we were going to the supermarket, and instead we had to go somewhere else, he would get very upset due to the 'change' in plan.

 

So you might want to google the other criteria and see what the differences between them are.

 

As far as I know, the only difference between HFA and AS is that with AS the child must have developed speech normally up to age 3.

 

Although my own son was saying some words, and short 2/3 word sentences he struggled to understand pronouns. He always referred to himself using his name instead of 'I'. He would repeat back questions I asked him eg. "do you want a drink" would be repeated back.

 

From the age of 3 he started repeating alot of TV and film dialogue. He often did not answer my questions, or gave answers unrelated to the question asked eg. if asked "what is the man doing?" [he is washing his blue car], my son would reply "blue".

 

My son also has a Sensory Processing Disorder.

 

Does your child also have Dyspraxia?

 

Who carried out the ADOS assessment?

 

When my son was referred he was seen by a Speech and Language Therapist, a Clinical and Educational Psychologist and a Developmental Paediatrician.

 

We were told by the speech therapist to expect a diagnosis of an ASD just on his language and social skills performance. So a referal to an experienced Speech Therapist could be useful.

 

In our area there is a dedicated multi disciplinary team that assesses children. So they are seen by a number of professionals who are all diagnosing children on a frequent basis, so they have alot of experience.

 

I would also suggest that you keep a dairy and write down anything unusual he does or says.

 

What is your child's speech like. Can he hold a two way conversation, or does he just want to talk about what he is interested in and is not bothered in anything the other person may be saying.

 

What are his social skills like. Can he use imaginative play, can he join in games with other kids.

 

You say he has alot of tantrums. Are these sensory based [and most if not all those on the spectrum do have sensory issues ranging from mild to severe], or due to change, transitions, lack of forewarning, not having his expectations met?

 

Can you easily get him to turn off the TV or computer to leave the house to go shopping?

 

How is he doing in school academically and socially. And does he like going to school?

[claire4274]

Many thanks for your replies. @ Sally 44 - Where to start? This is going to be long!

 

 

My sons ADOS was carried out by his Clinical Psychologist and her colleague. The report they gave us stated that my son, '... does not meet the criteria for a diagnosis of Autistic Spectrum Disorder... [he] has some good communication and language skills...able to engage well in social interaction and clearly demonstrates his pleasure in doing so. However...[he] does have a tendency to focus on his own agenda and can be inflexible... struggled with some of the less concrete themes in the assessment... has a tendency to provide lists and to think in a compartmentalised way.'

 

 

The report then goes on to say, '...it may be worth while seeing how some of these traits emerge over time as the social demands become more complex. Although [he] does not meet the criteria for diagnosis at this time, should these difficulties persist he may benefit from reassessment at the next developmental stage..'.

 

 

He is a good talker and we can have some very good little chats. This is often when I learn how things effect him. He does have a tendency to focus on what he wants to talk about. If someone starts talking about something else, he will listen (because he knows that's the polite thing to do), but as soon as they stop, he will immediately go back to what he was talking about.

 

 

His imaginative play is limited. His toys tend to be from TV shows he watches, so he knows 'how' to play with them. He will join in with games with his friends, but he has told me that he doesn't like it. I watched him stand with a look of bemusement on his face when a school mate pretended to put a bomb on his head and blow it up. When the boy said 'I blew your head off', he replied very matter-of-factly, 'it's still there!'.

 

 

His tantrums are a caused by a mix of things. We have the 'explosions' when he has sensory overload. But we also get them when unexpected changes in routine occur. If something happens that is beyond our control ie he can't go out because it's raining, or a friend who was supposed to be coming over can't for some reason, we get the blame. There was one occasion when his friend had arranged to come and pick him up at 10 am. From 9.30, he was extremely anxious and was saying things like, ' what if he doesn't come?' & 'what if he can't remember where we live' (the same friend had delivered an Easter egg the week before and has been to our house on several occasions).

 

He can't handle negative emotions - disappointment, frustration etc. We can't play competitive games because he will launch into a rage if he loses. Music practise can be a nightmare if he makes a few mistakes. We do our best to stick to a daily routine and give him as much notice of any changes. He gets anxious about moving into the next year in school - new teacher, classroom assistant and classroom and doesn't like places he is not familiar with.

 

 

He does well at school, though his sensory problems do mean he can 'explode' when he gets home. He takes comments his teacher gives to the class personally. Because of a physical condition he has, he is allowed to get up and move around and has been told this. However, when the teacher told the class that they had to sit still, he took it to mean him as well and sat in pain for the whole lesson.

 

We see this at home too. If we say something like, 'don't be daft', he will get upset and say that we are calling him stupid.

 

On top of all this, he has some 'odd' behaviours (when I say odd, I mean that I don't understand them). He cannot tolerate having a cup of water or juice in the same room. He will drink from his own cup, then put it into another room. He will not drink from that cup again. We can't even bring a cup of juice into the room without him becoming upset and agitated. He takes all the cushions off the furniture. He has told me he 'doesn't like the way they look. He won't sit on a chair if there is anything hanging on the back of it. He hates people yawning and always tells them to stop. He is terrified of bees and wasps to the point where he will not go outside. We spent most of last summer indoors. This is just one of his many fears.

 

He can argue for England, but will often not make any sense and often refuse to do what he is told, even when punished.

 

He doesn't seem to understand the parent/child relationship - we've been told many times, 'you're not the boss!', and rules apply to everyone - 'you can't have crisps if I'm not allowed!'.

 

 

When he gets upset he tends to run away and hide - covering his face and ears. He will growl or grunt and will be verbally abusive. Sometimes he will hit, though this seems to be 'lashing out', rather than an intentional punch.

 

 

There are lots of other things - too many to list here. This is why I want further investigation - it seems that although we talked about these behaviours with the clinical psychologist, they don't seem to have been taken into account in his assessment, in fact they seem to have been attributed solely to his sensory problems and the way this effects how he sees the world.

 

 

We need help - a diagnosis won't change the problems we are faced with, but will allow us to access help that will benefit our son and ourselves.

 

 

Hope I haven't given you eye strain, but I wanted to give as much info as I could.

Edited May 16, 2012 by claire4274

[Special_talent123]

according to my report i read that it was a no to aspergers because i could express emotions or something like that, but then they asked about autism instead and it was a yes because i was repetive with obsessions, and had a speech and language delay and i was echolia etc

[Sally44]

TBH, he sounds to me like he does tick the boxes.

 

He has speech and language and social communication difficulties that impact on him significantly. He takes things literally, he has concrete thinking. He probably has Semantic Pragmatic Speech Disorder.

 

He struggles with emotions.

 

He has problems with changes to routine, expectations not being met.

 

He has high levels of anxiety [anxiety is another major issue with an ASD].

 

He has sensory issues.

 

He has problems with imagination, lack of flexible thinking, probably struggles to problem solve other than literal concrete solutions.

 

I would ask for a referal to a Speech and Language Therapist. There are some good ones in the NHS. Why didn't the Clinical Psychologist refer you? Ask for a referal either from your GP or via the school. Or phone your local childrens hospital and ask to be put through to the Speech and Language Department and ask them if they have a multi disciplinary team that assesses and diagnoses children with autistic spectrum disorder. If they do ask them how to get a referal to them. If they don't ask them who does and get in touch with them.

 

Write down all the things you notice about his speech and social communication that is odd or different [including those you've listed above - because as another mum of an ASD child I recognise everything you have said because my son is the same.]

 

If you still don't get any joy, you could have a private assessment carried out. But I would try the NHS route first.

 

You want them to carry out full standardised assessments of his receptive and expressive speech and language skills AND his social communication and interaction and play skills.

 

Typical standardised assessments are CELF 4 or ACE. These assess a number of different skills such as word meanings, associations, comprehension, inference, formulating sentences, etc. It also looks at things like literal interpretation of language, working and short term memory, sequencing etc.

 

Like you my son has a SPD. That was the first major problem we noticed with him. School referred him to the Speech Therapist and she referred us onto the communication clinic at the local childrens hospital that has a MDT that assesses children and diagnoses them with ASDs.

 

I am guessing that alot of his other odd behaviour is maybe down to inflexibility and concrete thinking, or not being able to cope from a sensory point of view. For example, if he has a visual picture of what the room looks like, he may get upset if there are things added or removed from it. How do you think he would react if you re-arranged all his stuff in his bedroom?

 

Yawning maybe the noise it makes, or the exaggerated facial expression that unnerves him.

 

What is he like with noise. My son could not stand the vaccum cleaner, hand dryers in public toilets etc. Sometimes it was not the noise itself, but the unpredictability of it that caused the anxiety eg. refusing to go into public toilets 'incase' someone set off the hand dryer.

 

Remember that there are many senses that maybe over or under sensitive or both at different times and they may not be communicating information effectively. Eg. my son can get very upset at a small scratch or trying to comb or cut his hair, but could knock out a tooth and not complain of any pain. He has had bad ear infections in the past and never told anyone.

 

My son also has problems with smell, balance, co-ordination. He cannot ride a bike or brush his teeth.

 

He cannot stand certain combinations of food because of their look, smell and texture. He used to have to have certain foods in certain plates/cups.

 

He has to have all tags cut out of clothes.

 

Buying shoes is a nightmare because they either all hurt him, or he cannot feel anything.

[Sally44]

One book I found very useful was by a woman called Olga Bogdashina "Sensory and Perceptual Differences in people with Autism and Aspergers" [i think that was what it was called].

 

She has a daughter with AS and a son with Autism. She is a Russian Linguist [specialist in languages] and she noticed the sensory issues and language differences in her children. She also runs a school in Russia for children with autism. She is often a speaker at different NAS groups around the country.

 

You may find, as I did, that on reading her book you recognise your own child and how they fit the criteria for an ASD and what is behind some of their behaviours [because alot of it is down to sensory processing and perceptual issues]. Alot of the anxiety is down to lack of imagination and inference and flexibility. If you cannot predict the possible outcomes of any change or action, that will make you anxious.

[Sally44]

http://www.awares.org/static_docs/about_autism.asp?docSection=3

 

This is another link to information about the "Triad of Impairments". This is seen in all children on the spectrum, and from your post above your son fits this criteria as he has impairments in all three sections.

 

He has receptive problems in literal interpretation of language and concrete thinking.

He has problems holding a meaningful two way conversation because he is not interested in what the other person is saying. He just wants to talk on the topics of interest to him. [what are his interests?].

He does not like change or unpredictability.

He has stereotypical behaviours such as needing things done in a certain way. [Does he spin, tap things, flap,]

What is his facial expression and voice tone like?

 

The examples in this link are from children with more severe autistic behaviours than your son.

 

Your son is more capable, but has the same problems. So he can attempt to interact, and may even want to have friends and interact, but he does not know how to do it. What he does do is rote learnt [ie. he does it because he knows it is expected, but it isn't an automatic response, it is learnt].

 

What you need to remember is that it is a 'spectrum' disorder which varies from mild to severe [that applies to each skill], so there can be mild problems in some areas and significant ones in others.

[claire4274]

Thank you so much for your replies.

 

Sally44 - Our son was seen at school by the Speech Therapist, they observed him in class. The summary of the report basically says that "he has very good and appropriate social interaction and communication skills. His resecptive and expressive language skills showing an understanding and use of abstract and concrete language that is at the very least appropriate for his age and with many examples that were above........ it would appear that he has the appropriate skills to interact and communicate socailly with other children." They also said that his facial expressions etc were also fine.

 

The problem is, and we have also been told this by a specialist OT who saw him for his Sensory Processing, was that because he was intelligent, he knows what is expected and how to behave when he needs to. We believe that this is the same as with friends etc at school. He understands what is expected and we think therefore goes along with it. Ben, our son, has shown when friends have been at our house very different. If they do not do what he wants, he gets very upset. One time his friend came to our house and because his mother was unwell at the time and he was worried, so he didn't feel like playing. This was a total disaster for Ben and he got very upset and cried in our bedroom until his friend agreed to play. We did try to explain to him that his friend's mother wasn't very well, but all he was bothered about was that he didn't want to play.

 

With reference to your other questions. I would never move his room around without consulting him first, as I know that he would probably get upset. We had to move his bed around for him as he was frightened of a pattern on the ceiling when he was trying to get to sleep!

 

With regards to the yawning, he has commented that he doesn't like the sound or how it looks and also he has a real problem with saliva. We think that is what the problem is with drinks and cups etc.

 

Ben also hates hand dryers in public toilets. He hates a lot of unexpected noises, even if we call his name sometimes he will get upset and says that we scarred him. You couldn't walk up to him and go "boo" because he would find that frightening. Firesworks are a nightmare, even when he is in the house. He even hates the sound of the wind, especially at bedtime, he gets very scarred.

 

My son also freaks out if he gets the slightest scratch, you would think that his arm had been chopped off! Hates hairs cuts, finger nails being cut.

 

And shoes. We have an absolute nightmare with trying to get shoes. We have even been asked by a certain shoe shop to leave as we were taking up too much time with the assistant! Needless to say I have never been back and we only go to places where we can try the shoes on ourselves. They have to feel just right.

 

Ben used to spin a lot more than he does now, he never gets dizzy. He seems to change those little habits. Flicking his thumbs, twirling his hair, making strange shapes with his fingers. He also figits his legs back and forth when standing, especially when excited or talking to teachers/people with authority.

 

We are going to go to out GP and ask for another referral. We have over 3 hours of video footage of his behaviours to show. The problem we have is that when we go to doctors appointments, he will sit there well behaved and because he has good reports from school they tend to believe them and not us.

 

Our school OT is also helping us. We have given her a very long list of all of his behaviours. She is going to speak to our local autisic school and see if there is anything they can do. She is also going to speak at the next meeting where different people talk about children with problems to see if anything can be done.

 

It is really nice to have your comments as sometimes I feel as though I am going mad and been made to feel as though I am making these behaviours up, especially as we have been told he is not ASD.

 

Many thanks for your help.

Claire

[Sally44]

I would print off your posts, and keep a dairy of other things, and take them along to your next appointment. For me reading your posts it is quite obvious. So I can't see what they are struggling with. Maybe they think he is so capable that he will be okay. But that usually does not work. You already know how anxious he gets. That will most likely increase as the academic, social and communication demands increase in school.

 

Spinning is a repetitive behaviour, as is hand flapping. Did they know he used to spin alot? It is also a sensory thing [as is hand flapping].

 

As you say, he is doing alot of things because he knows how to copy. My son was the same. He would do everything other kids did, but a couple of seconds after them. He can mimic and copy, but he does not have the understanding behind it. My son also wants to have friends and to play, but he is often only thinking of what he wants to say or play. He trys to stage manage play, and tell other kids what to say or do. And gets upset if they want to deviate from his 'script'. He would also want to go to a child's house because of the games they had, rather than for the child itself. It can seem selfish and self centred in some ways. But it is a lack of awareness.

 

My son has been assessed for theory of mind, and he does have that. Google the sally ann game, and see if your son can do it.

 

I think the SALT was misguided, to say the least.

 

Google Semantic Pragmatic Speech Disorder.

 

I would probably recommend that you did see a speech therapist that is experienced in assessing children with an ASD, and who also has experience of writing reports for educational tribunals. You need a full assessment as if you were requesting a Statement for your son. The SALT needs to identify each and every need, and quantify and specify provision to meet those needs. They need to assess him using standardised assessments of his expressive and receptive speech and also his social communication.

 

Due to his sensory processing disorder, he may struggle in a mainstream class size. He may need smaller group work and some 1:1. He may cope in primary, but may struggle in years 5 or 6. And if he does struggle, or even refuse school [as my son did], then you know that mainstream secondary may not be an option, unless they have a unit of similar peers, or their class sizes are significantly smaller.

 

But first of all you need the diagnosis.

 

What are school saying?

 

Are you thinking of requesting an assessment for a Statement?

[Sally44]

This is a good example of the Sally Ann game on you tube. See what your son does.

 

[Sally44]

My son can work out this basic theory of mind test. But he struggles with the next level of complexity. So it would be interesting to see what your son does. Theory of mind, again can be simple or complex. For able children on the spectrum they may pass some of the simplier tests, but fail as the tasks get more complex.

 

This would also be another big indicator of an ASD if he fails to get it right. And even if he does get it right, he would need to be assessed at a more complex level to ensure he did have age appropriate theory of mind.

Edited May 16, 2012 by Sally44

[claire4274]

Hi Sally44,

 

I have just watched the Sally Ann test and then decided to try it out on Ben. I basically copied the test but used his teddies instead. I asked him where Sally (Penguin) would look for the shell (that's what I used) when she came back from playing and Ben said the box of Ann (t-rex). So he couldn't do it the same as the boy on the example. Ben is 8 years old, 9 in September. I tried the test twice on him and both times he gave the same answer. I must say I am shocked, I was sure he would get is right as we always get told how clever he is. Luckily the web cam is on constantly at the moment recording his behaviours so will have captured this test both times.

 

With regards to school according to them he is 'perfect child' at school. Well behaved, polite, model pupil basically. (He is terrified of getting wrong at school.) When we have meetings and describe what he is like at home they cannot believe it. Accademically he is fine, above average in most things. They see no ASD ebhaviour at school. So needless to say they are not concerned about ASD and we get no help in that regard from them. He is on Special Needs register but for a physical condition called Ehler Danlos Syndrome and they also note his Sensory Processing Dissorder. Depending on the teacher, depends on how much they believe us I think. His current teacher is as accommodating as possible, taking note of his anxiety and trying to help with that where possible. I think I have no chance of getting any help with a statement!

 

Many thanks.

 

Claire

[Sally44]

But you've just proved he has little theory of mind and have that recorded.

 

No-one is going to push for your son to get the support, help or school placement he needs. No-one does that job. Just parents.

 

This is the thing with an ASD. A child can be very bright in some areas. Maybe even a mathematical genius, because maths is logical. If you know the process, you always get the right answer. But having a lack of theory of mind is going to affect his understanding at a very basic level. Children should pass this test at a much younger age [5 I think?].

 

The other diagnoses your child has is very typical for those on the spectrum.

 

I would phone the Speech and Language Therapy department where the SALT came from that saw your son. I would ask to speak to the Head of the department. Say that you have major concerns that your son is on the autistic spectrum. Say that he has many speech and language and social communication difficulties typical of an ASD [literal understanding of language, concrete thinking, lack of inference, poor social communication and conversation skills wanting to keep reverting conversations to his topic of interest.

 

Say that he is struggling in school eventhough he is holding it together whilst in school [again this is a common behaviour. My Clinical Psychologist even said that this Jeckyll and Hyde behaviour is typical of a child with an ASD who is not coping in school].

 

Tell her that you have carried out the Sally Ann test on your son at home and he cannot do it. Therefore he has a lack of theory of mind consistent with an ASD. Say that you want her [head of the department], or another Speech Therapist that has additonal qualfiications and experience of assessing and diagnosing children with an ASD and speech and language disorders.

 

She may say she needs the school to ask for a referal again, which you would have to ask them to do.

 

Everything that is discussed, type it up in a letter and send it to them so that you have on paper what was discussed and what was agreed. From now on you have to get everything in writing. Don't rely on anything verbal.

 

Phone the Childrens hospital and ask for their SALT department [if it is different to the one above], and ask them if there is a MDT within the childrens hospital that assesses for ASD. If there is ask how you would get a referal. Check if it is the same Clinical Psychologist. If it is the same, then you will have to ask to be referred back to them with the additonal information you have [all your notes and the outcome of the sally ann test].

 

The SEN process is very slow. It may take you a year to get a diagnosis. If you ask for a Statutory Assessment, that takes 26 weeks from start to finish. By the time it is all completed [and you may well need to appeal the final Statement], another year will have gone by.

 

As a parent, you can ask the LA to assess for a Statement without anyone agreeing. You would send them a letter asking for an assesment and detail your concerns.

 

I'll post a link to www.ace-ed.org.uk which has some useful information on what to include and how to get the Statement right.

 

If you ask the LA to assess, they have to go to the EP and SALT and ask them to assess your child again. If you have already phoned and spoken to them, and told them the information you have, and have put that in writing to them. And have asked them to carry out standardised assessments etc, the LA is going to find it hard to refuse to assess.

 

Get another referal to the ClinPsych [the same one or a different one if possible]. Take all the new information you have, including the recording of the sally ann test. Tell them that he is not coping in school eventhough he is holding it together whilst in school because he does not like to be told off [my son was exactly the same]. Say that he is a very high level of anxiety and you think he is deteriorating and could refuse school. Say that you need a diagnosis to apply for a Statement, and that it is very clear to you that he is vulnerable and has SEN. You could even write to them beforehand and ask them how they felt he did not meet the criteria because you have looked at it and you can see he has behaviours in enough categories to achieve a diagnosis. Say that as he is not coping in primary school you have real doubts that he would cope in secondary school.

 

When you've had this further appointment [which could be some months away]. Tell them at this appointment that you have been reading the SEN Code of Practice for the Statementing process and that says that EACH AND EVERY NEED MUST BE IDENTIFIED. So ask them to provide you with details of all his needs and how those needs should be met in school and that that provision must be quantified and specified as per the Code of Practice.

 

[the above is all rather formal, but that is the message you need to get across to this health professional. By law the Statement MUST identify each and every need and provision must be quantified and specified, so the ClinPsych must provide that - although they may not know they should]. Have a look on www.ipsea.org.uk website, which details lots of examples of court cases and the interpretation of the law.

 

After you have had this appointment, and hopefully it has gone well and they agree to further assess, or agree he has an ASD - then write to the SALT and EP asking for standardised assessments etc. Telling them of the video footage you have etc.

 

By the time you get to the Proposed Statement stage things may have deteriorated significantly. If he does not have this basic theory of mind, he is not going to understand alot of what is going on. He will get very frustrated and anxious because things will be happening without him understanding why due to his lack of imagination, theory of mind, inference etc.

[Sally44]

And I am sure you were shocked that he failed this basic test.

That is how ASD children are. My son gets percentile scores of 92 [where he would perform better than 92 out of 100 children] on some skill sets; but also scores 1, 2 or 3 on other skill sets [where 3 is classed as severe and 8-13 is average].

 

My son has a severe/profound speech disorder and is echolalic. Yet scored above average on some language tests because he is like a recorder. He can memorise hours of TV dialogue and repeat it back verbatim. So when asked to repeat back the story he was told he got it word perfect. But that does not mean he understand what each word meant, or what the meaning behind the story was.

 

As he has this lack of theory of mind, it would be very interesting to see how he scored in the "formulated sentences" subtest on the CELF 4 speech and language assessment. [i think that is part of CELF 4 and not ACE]. Ask the SALT to carry out this subtest.

 

The SALT or the EP can assess for theory of mind.

 

I think your major argument from here on is that he failed this theory of mind test, which is an almost 100% indicator of an ASD.

 

But more annoyingly is that those professionals do know this and should have carried out this type of assessment already.

Edited May 17, 2012 by Sally44

[Sally44]

This is the link to ace-ed http://www.ace-ed.or...ucational_Needs

 

This is the link to ispea http://www.ipsea.org...n-problems.aspx

Look at their Common Problems and How to Take Action sections.

 

This is the link to the National Autistic Society http://www.autism.org.uk/

 

All these organisations have helplines and some have email help services too.

 

Don't be afraid to start the process of asking for an assessment.

Don't be afraid to ask professionals to explain their decisions and how they came to them.

Don't be afraid to challenge them.

Don't be afraid to ask them to do things.

[but just do it all in a nice and polite, calm but firm manner]

 

I think you need to start it now because it will take you a while to get a diagnosis, to get a Statement, to appeal a Statement etc. By that stage your son could be in year 5 or 6 and you need this all done and dusted before the transfer to secondary school. You need this information to help you make decisions about the type of secondary placement he needs. And IF he does need something like an Autism Unit, or a special school specifically for children with an ASD, he will need a Statement to get a placement.

 

A Statement is the ONLY legally binding SEN document. Whatever is in the Statement MUST be provided for your son. If he does not have a Statement the school or LA not legally bound to do anything and you can do nothing about it.

Edited May 17, 2012 by Sally44

[claire4274]

Thanks again for all the info. My head hurts! I will make sure I have a good read through and will contact the SALT to get the ball rolling. Not looking forward to the fight that I am sure I am going to face due to his previous assessments, but I don't have any other option if I want access to the help we need.

 

Will keep you updated.

 

Many thanks

 

Claire.

[Sally44]

Sorry. I know it is alot to think about.

 

Try not to panic. Just slowly work through it step by step.

 

And if you have any queries you can post them on here.

[dekra]

My son has just had his ADOS last week and he also was not diagnosed based on the test results - I have been told they understand the reasoning behind us believing he had ASD as a lot of the signs of his language disorder and developmental delay are mimicing ASD but they do not feel ASD is the dx. They have said LD is still a serious issue and is just not as publicised as ASD and they are taking it seriously. If they are not dx-ing ASD for your son they may hope that there is an element of something similar that whatever is causing the traits that seem like ASD is being caused by something else which may improve or resolve. Other than that I can't think of an explanation because TBH to me it's hugely confusing being told it's like autism but it's not autism.

[claire4274]

Hi dekra,

 

Thanks for your reply.

 

I fully understand how confusing it must be to be told it's like autism, but it's not. That's the problem with ASD - there are so many other things that cross over. On the up side, at least they are still going to help you with the problems your son does have.

Our problem is that we have been told it's not autism (YET), but they haven't given any other explanation of what it could be, or what they think it could be. We were discharged last September and left to our own devices. They told us we might want to come back for re-testing in a year or so. In the meantime, we have problems everyday at home and we want to know why.

 

I hope you manage to get the help your son needs, be prepared to fight for it.

 

Claire

[Sally44]

As far as I know, the theory of mind test is ASD specific and would not apply to a child with LD. But I know there is research into this.

 

By carrying out those types of assessments they can quickly identify that a child has this ASD lack of ToM and can do further assessments.

 

Professionals do know about ToM and the assessments that can be done, so it is very frustrating when parents end up having to do the leg work and research so that they can ask the professionals to do something [ie. assess theory of mind], when those same professionals already know about it!

Edited May 18, 2012 by Sally44

[Sally44]

Another thing I would add is that schools often talk about the child's strengths - which is good.

 

However my son's last primary school repeatedly said they had "no concerns", when there were lots of concerns. The reason they did this can only be because they did not want to spend their budget on referring him to outside professionals.

 

Even when he had been out of school for nearly a year, and we could prove that he knew less words in year 5 than he did in reception year, even when he had a further diagnosis of an Anxiety Disorder - the SENCO sat at the Tribunal and told the Panel that they were "happy" with his "progress" and "had no concerns". The Panel did challenge that statement. But the fact remains that that was the line they stuck to.

 

By comparison I knew that my son was having huge difficulties. At age 10 he still could not read or write independently and he was assessed as being average cognitive ability. School said he had made "excellent progress". So I took my son to an independent school that is for children with Dyslexia, and which also takes children with Aspergers.

 

The Head [who was also the EP and Neuropsychologist] assessed him. His results stated that my son had dyslexia and dyscalculia to such a severe degree that he was too severe for their school. This school was for children with severe dyslexia who were not coping in mainstream.

 

That shocked me. This huge difference between his school saying "excellent progress" and needs no further input and they have no concerns, and the Head saying "he has a specific learning difficulty that is too severe even for our school." The head recommended 6 hours a week 1:1 for both literacy and numeracy with a specialist dyslexia teacher.

 

And my LA does send children with Dyslexia to this school, so they know all about it and their criteria.

 

So you need to really investigate what progress has there been. And what is that progress being measured against?

 

As I said, my son learnt a number of words in reception year. When he moved to another school they assessed him on arrival and found he knew no words at all. So after a year, when they said he had learnt 6, they said that was excellent progress. But a year ago he knew 45+, so actually that was a severe deterioration.

 

So you really do need to keep all IEP and assessment and school reports. That is why standardised assessments are so important because they give you a baseline reading from which to measure progress from. So if he scores a standard score of 8 one year [that is about average], if the next year he scores 7 he has deteriorated, and if he scores 9 he has improved. If he scores 8 again that means he has improved in line with what is expected for his age increase.

 

And on assessments using these types of standard score my son's results ranged from 1 on some assessments, 8-13 on others and 14/15 on others. Any result falling between 8-13 is average and 3 is classed as severe difficulty. So you can see that his profile was about as spiky as it could get. And, yet again, results by LA and NHS staff mainly included those 'average' and 'above average' results, and often did not even mention how poorly he did in others. Or if they suspected he would do poorly they did not even use that assessment sub-category at all. This was deliberate, and I still find it hard to understand how they did that knowingly.

 

And once all the subtests have been completed, those scores are supposed to be carried over to a final table that gives an overall ability. Because although a child may score 15 in one test, if part of any task requires a skill where the child scored just 1, that means the child will fail that task. But if that difficulty is known, work can be presented in a way that that child can achieve the task. That is whole point of doing these assessments. To learn what the childs strengths and weaknesses are.

Edited May 18, 2012 by Sally44

[Sally44]

http://media.education.gov.uk/assets/files/pdf/s/sen%20code%20of%20practice.pdf

 

This is the link to the SEN code of practice - this is the SEN Bible.

[claire4274]

Hi,

 

well I am now confused. Ben failed the Sally Anne Test the other day, but I have just tried a couple of variations on it and he passed. So I then decided to try the original Sally Anne test again on him and this time he passed! I asked why he said differently the other day and he didn't know. I also asked why Sally would look under her basket for the marble and he said because she doesn't know Anne moved it - correct!

 

Well we are seeing the GP next week to ask for a 2nd opinion. We have also spoken to our local SALT and they agree he needs deeper investigation and will call us back next week when the lady who deals with ASD is back, and we have sent a letter expressing our concerns to our local paeditrician, who deals in ASD, expressing our concerns about him (this was on recommendation from SALT). So I guess we will just have to see what happens after that.

 

Claire

[Sally44]

Okay, that is good if he does manage to get that right, and other similar tests right. But they then need to assess more complex situations. My son passed the Sally Ann Test, but failed on more complex questions.

 

But at least everyone is agreeing that he needs more investigation, which is what is needed.

 

Don't keep doing this test on him because he can learn what the answer should be. Let other professionals now see and assess him.

Edited May 18, 2012 by Sally44

[claire4274]

Hi,

 

just wanted to give an update.

 

We have a member of the local SALT team coming to our home next week to speak to us about our concerns and also to see Ben. So we shall see what happens with that. We have also been referred to CAMHS by our GP. Not sure how long the waiting list is but we are hoping the SALT will be able to tell us something in the meatime as this is the area we feel he fits the criteria the least. His teacher, who is great, also has told me she has no concerns regarding his communication and social skills. The only thing that she sees is his anxiety at school. She had to stop a SAT (optional SAT) at school this week because she could she how anxious Ben was getting.

 

Hope everyone is well.

 

Claire

[Sally44]

So did your son learn to talk at around the typical age?

Did he understand pronouns such as I, you, me, he, she, them etc. Did he refer to himself as 'I' or did he use his name.

Could you ask him questions and he gave an appropriate answer.

Does he use social chit chat, or does he use language to request things or give statements or talk about his interests.

Does he have an unusual voice tone, voice volume.

Does he use words/sentences lifted from TV/films in his language.

Does he have an American accent, or accent different from that acquired in the area he lives.

Can he hold a two way conversation with a peer and keep to their topic and not manipulate it onto what he wants to talk about.

Can he give you understandable information verbally about what has happened and what he has done in school.

 

Does he have friends.

Can he play with other kids.

Do other kids include him, or is he usually on his own in the playground.

What kind of play does he like?

Is it spontaneous, or is it repeating things he has seen on TV.

During the holidays/weekends, does he go round to other kids houses to play.

 

Does he take language literacy.

Does he understand sarcasm.

[claire4274]

HI Sally44,

 

I shall answer your questions in order.

 

Yes he started talking at the typical age.

Yes he is able to understand pronouns and does refer to himself as I ,me etc.

Yes you can ask him a question & he will give an appropriate answer, except when he is angry or in meltdown, in which case he will just grunt or growl at you.

Social chit chat not so sure about, he will talk but a lot is him talking at you. Yes he will use language to request things. He does like to talk about the things he wants to and must tell you everything. If you interupt him he will still go back to what he was talking about.

I don't think he has an unusal tone of voice. His volume can be set on loud a lot. He struggles with understanding our tone of voice ie. if you have a stern voice he will think you are shouting at him.

He sometimes uses words from tv but doesn't repeat back sentances from it.

He doesn't have an unusual accent.

We are not sure about holding a conversation with peers, as we don't get to see that very often.

Yes he can give understandable information verbally. He doesn't tell us often what has happened at school but when he does he will tell you loads.

 

Yes he does have friends at school. He has told me after questioning him that they make friends with him not the other way round.

Yes he can play with other kids. He tells me he wants them to do what he wants and that he often gets angry with them when they don't.

As far as I know, he is included in play at school. As I said, school have no concerns and think he is fine socially.

He tends to like to play on his video games or it tends to be what he has seen on TV. It always seems to be 'fighting' games.

I often think it is things he has seen on TV. He usually doesn't let us watch him during play. He asks us to leave the room or goes to his room.

He very occasionally goes to a friends house to play, usually in holidays. However, we don't live very close to other kids.

 

He doesn't do things like if I said "Get lost", he wouldn't try and get lost. Sometimes he does ie. when with an OT she asked him to write the numbers 1-10. So he wrote one, two, three etc instead of 1, 2, 3. He gave me a scare once and I called him stupid (not nastily) because he scarred me and he got very upset saying that I was calling him stupid. We had to explain that I wasn't being mean.

I think that he does get sarcasm and can be quite sarcastic himself.

 

As I say the social and communication side we think is the least like ASD.

 

If it is not ASD we still need to know what is causing the other behaviour problems and how we can try and help him.

 

Many thanks.

 

Claire

[Sally44]

Is the speech therapist going to carry out standardised assessments such as ACE or CELF 4. And also a social communication assessment?

 

Don't assume. Speak with them and put the request in writing. You need more than just observations and a play session. You need to know what his scores are on all skill sets. That will help you pinpoint where he has difficulties [if any].

[Sally44]

If you google "DSM IV Aspergers", you will see that there are no speech and language criteria for Aspergers because they are supposed to have typical language development.

 

They may take language literally. But their difficulties are more around social communication ie. being able to join in conversation and games on another persons interests or topics rather than always trying to manoeuve any conversation or play onto his interests.

 

There can be empathy in others [whereas the criteria talks of lack of empathy]. IMO this is often due to lack of understanding the language, social implications, inference of things said rather than lack of empathy. If the situation is explained they can show empathy.

 

And so an assessment to do with social communication and also theory of mind is essential.

 

Hope you get some answers soon.

 

Let us know how the assessment goes.

[claire4274]

Hi,

 

I have no idea what they are planning to test for to be honest. The letter from them says "the purpose of the visit is to discuss your concerns and carry out some assessment of Ben's speech and language skills, and discuss possible next steps." She is coming on Wednesday morning so I don't think I will have time to put anything in writing to them considering the bank holidays.

 

Can I just ask what is ACE or CELF4 to test for exactly? What do they do? Just so I know what I'm asking for next week when she comes.

 

Claire

[Sally44]

The ACE and CELF 4 are called "standardised assessments". They test a full range of speech and language skills across a whole range of skill sets and give you a 'standard score' which is related to the results of a child at a given age.

 

For example a score of 18 for a 4 year old may give a standard score of 14 [where 8-13 is average]. That same score of 18 for a 9 year old may give a standard score of 2 [where 3 is classed as severe difficulty].

 

This is very good for highlighting strengths and weaknesses and also to enable you to identify whether progress is being made in the future.

 

Most SALTs would carry out both assessments [as they are slightly different and also slightly similar and so hugely varying scores on a subtest in ACE as opposed to CELF 4 would be very useful to identify].

 

It is important that they do ALL of the subtests [and not just the ones they expect the child to do well at]. And it is important that they feed through the standard scores to a kind of 'final table' that gives an overall standard score. For example a child might perform above average on one skill set, but if another skill is required that the child fails at, the child would be unable to complete the task. This is very important to know when the school/SALT is differentiating work and setting targets and putting together a therapy programme.

 

For example, if a child has poor working memory that affects the ability to remember and complete any task, then the school needs to know that and differentiate work so that it is presented either visually, or they use repeated prompting to ensure the child retains what they need to do, so that they do compete the task/lesson and do achieve work that can be graded. Without that support the child may unable to complete most work given, and that would give an overall impression of a child with low cognitive ability, when that was not the case at all. Once the working and/or short memory problems are supported the child may achieve average or even gifted grades.

 

For example, the difference between a child with dyslexia having to write their own essay, as opposed to a scribe being dictated to by the child and writing the child's ideas down could give different grades ranging from remedial to gifted just depending on who WROTE the essay. A child with dyslexia would automatically write a short essay, keeping to simple words, bad grammer and spelling etc. A scribe would write exactly what the child "said". A dyslexic child keeps to what they feel confident to write, which maybe well below their actual ability.

 

MOST IMPORTANTLY You also need to ask the SALT to assess theory of mind and social communication skills.

 

A child with Aspergers may give very good assessment results on just a speech and language assessment. You need the SALT to assess areas that are typically known as problematic for children with aspergers.

 

After you have met you can still send in a letter of what was discussed and agreed. And if they have not assessed theory of mind and social communication and play skills, you need to put in a request for that to be assessed.

 

Otherwise you could be told "no concerns" on the areas assessed. But you have already said that his speech seems okay. So it is the other aspects, that are still part of the SALTs job to assess and give therapy for, that need to be assessed.

Edited June 1, 2012 by Sally44

[Sally44]

These are some links to CELF 4.

 

You can also google "Speech and Language Therapy ACE Assessment" too and see what comes up.

 

This link details the subtests http://msltprac.wordpress.com/auditory-comprehension-receptive-language/clinical-evaluation-of-language-fundamentals-4-celf-4/

 

This link has some question and answers from professionals about the assessment http://www.speechandlanguage.com/tag/celf-4

 

The Speech Therapist should include some imaginative play in her assessment.

 

Social Communication checklists can be completed by school and yourself for analysis and comparison, which contains alot of questions like:

 

When your child talks to you does he look at you: always - sometimes - never

 

When you are talking does your child interrupt: always - sometimes - never

 

Does your child have one or two topics of interest

that are the only things he wants to talk about

Please detail what these topics are.

 

Can your child work as a team towards a common

goal or task: always - sometimes - never

Edited June 1, 2012 by Sally44

[claire4274]

Thanks for that. I'll let you know how we get on.

 

Claire

[claire4274]

Hi,

 

just wanted to update you on our appointment this morning with SALT.

 

We feel as though it was positive. She listened to our concerns and seemed to understand where we were coming from. She took loads of notes etc. We also gave her our list of behaviours that we see at home to take away with her, as there are too many to talk about in the session. She then did an assessment with Ben, although I don't know which one.

 

After scoring it she gave us the 3 results. 1st score was in the 30's percentile and said that it was just within the 'normal' range. 2nd score was in the 90's percentile and 3rd score was in the 80's percentile. She said that she also noticed that he took quite a long time to process some of the questions. She said that she works with autistic children still at mainstream school who also score very highly like Ben, but wasn't sure if that was because of ASD or whether it was 'just Ben'.

 

So she is going to talk to school next week to see if they are seeing anything, no matter how small. I explained that his teacher has seen his anxiety at school and also when Ben works in groups at school how he will withdraw if everyone is talking at him at once. Ben also commented to SALT he didn't like working in groups at school. She is also going to speak to one of her colleagues, the lady who went out to Ben's school last year and did an observation. She will then get back to us to discuss what happens next.

 

Hopefully we may find what is causing Ben's behaviours.

 

Claire

[Sally44]

What that assessment seems to suggest is a "spikey profile".

 

Ask what assessment she carried out.

 

Also ask for a copy of the assessment results/findings.

 

There is a big difference between percentiles of 30 and 90. So out of 100 children he would do better than 90 in some skill sets, and worse than 70 out of 100 in others.

 

So, imagine that classroom based work requires different sub-skill sets to complete the overall task. If some of his sub-skills are on a percentile of 30, he is going to struggle to complete the task. Yet in other tasks he may find them all easy. So school need to know exactly WHAT the difficulties are [eg. he may need worksheets rather than listening to verbal instructions], so that they can differentiate his work.

 

He may also struggle with numerous sound sources due to his Sensory Processing Disorder.

 

 

BUT again you need to ensure that she assesses for his theory of mind; social communication and play skills. Is she going to do that?

 

You need to find out now, whilst she is involved. Because once she has finished and left, it will be difficult to get her back again.

 

 

I think some further investigation is needed.

 

And that he seems to take longer to process receptive language.

[claire4274]

I will contact her tomorrow and ask for a copy of the test results and what the assessment was. I will ask her if it is possible when she speaks to her colleague that his theory of mind & social and play skills can be tested.

 

Claire.

[dekra]

This is where I am lucky I guess, here in Scotland getting a definitive dx is not necessary for them to put support in place based on assessed need. At the moment whilst I do still have reservations about ASD I am content with the DX as it stands at the moment and I will wait to see if TOM develops. For me this will be the next significant aquirement or lack that will decide me if I raise the ASD question again.

 

On the plus side we are getting basic independently formed sentences beginning in the last few weeks, so he is still keeping just ahead of his sister, I am going to be devastated I think when (as seems inevitable) she catches and surpasses him lingistically.

[claire4274]

Hi,

 

just to let you know that SALT did the ACE assessment. Results were:- Sentence comprehension (complex grammer) 37th percentile, Inferential comprehension 91st percentile and Naming 84th percentile.

 

Claire

[Sally44]

You also have to consider that he has a Sensory Processing Disorder, and auditory information is sensory input and has to be processed.

 

It may also be worth you looking at http://apduk.org.uk/

 

An Auditory Processing Disorder is hard to diagnose. Children with it often mispronounce words or mix up letter sounds ie. problems with n/m. My son has an APD [as well as the ASD and Sensory Processing Disorder]. He says things like magmet [magnet], or 'masty' [nasty], or map [nap]. But it affects other consonent sounds too.

 

Does your son mispronounce words?

 

Is his reading and writing age appropriate?

 

He may also find it hard to concentrate in noisy classrooms especially when there are several sound sources at once. We get used to background noises [such as a ticking clock], he may never be able to screen out noises. And if he is in a group of people all talking at once, it may become a mish mash of sounds.

 

I also have an APD, and I find it very hard to tune into one sound source when there are lots of other background noises or conversation going on. I find that my ears pick up a real mixtures of sounds/words/sylabels from the conversation I am trying to listen to - but then it is mixed together with other sounds and conversations going on in the same room. Sometimes I can see lips moving and cannot make any sense of the 'sound' produced.

 

I cannot hold a conversation in a noisy pub or club because I simply cannot hear what the other person is saying no matter how loudly they are talking.

 

So these difficulties of a SPD may also include an APD?

 

But then you get to the question - as we did with our son - where does SPD and APD stop and ASD begins? There is alot of cross over.

 

That is why, when you said your child also has a SPD, I said that assessing his theory of mind and social communication skills were very important because a child with an SPD or APD should have typical theory of mind.

 

Also children with SPD and APD often have specific learning difficulties such as dyslexia because 'language' requires the efficient and correct 'reception' of sound, which is needs to be efficiently processed as part of the whole sensory processing package.

 

Then there are Specific Language Impairments, which again is a SpLD and a child can have that with or without an ASD.

 

When you say he can talk/argue and not make sense; can you give an example?

Edited June 9, 2012 by Sally44