how children relate their difficulties to professionals

[susiemumof3]

Just wondering if when going through appointments and assessments, did your child play down their difficulties so as to not look stupid or weird? All our reports from assessments so far state that there is a large discrepancy between what 'mother has reported' and what child says are weaker areas or concerns. He will admit to me afterwards that he didn't want people thinking he was odd, so he claimed things didn't bother him or concern him. All the reports also began with, ' child made and maintained eye contact throughout the appointment'. Now I am very aware that he is uncomfortable with eye contact, but when spoken to directly, he will look at the person's face, usually the top of their nose as this is enforced in school. Is that classed as eye contact, as he is conforming to social rules.

Thanks for reading, hope someone can help!

[Sally44]

I think you should write down these conversations with your son.

 

But professionals need to carry out "standardised assessments", you cannot fake the results. It is no good just doing observations for the very reasons you have detailed above.

 

So, the SALT should assess all receptive and expressive speech and language skills, AS WELL AS Social communication and play skills. This would include comprehension, inference, understanding social cues and many many more things that he will struggle with.

 

Many adults with AS have learnt how to 'fake' eye contact. They know what is expected and have learnt how to get around it. But the basic difficulty is still there.

 

So, I would be asking for standardised assessments to be carried out, and putting that request in writing. And I would also submit what my child was telling me he was doing.

[susiemumof3]

Thanks for that sally. What are standardised assessments? He has seen edpsych, salt, ot and pediatrician and various weaknesses have been identified such as short term working memory difficulties, literal interpretation inconsistency, auditory filtering problems, tactile sensory difficulties and audio/visual sensitivities but as nobody has observed him 'playing'with other children, social interaction has not really been considered. The pediatrician asked whether he has friends, which he has although these are very limited and are like minded children I don't believe it gives a well rounded view of his social behaviour. It's very difficult to keep pushing for them to consider his problems from an as perspective as they are convinced his problems stem from 'anxiety secondary to sensory difficulties'.

[Shnoing]

... what child says ... he claimed ...

Seems to me that the persons who ask your son about his own feelings about things have no experience about how autism affects your own self-perception.

If you take me (dx at age 37), I'd always answer that everything is ok, because due to lack of theory of mind I don't know how things should be. I might be able to conclude from reactions of others that something is "off", but that's something I'm beginning to learn just now.

E.g. if my step-daughter (age 25) tells me that I'm shouting at her, I know that I've had a stressful day at work. If I don't get told, I don't know. I don't hear any difference about how loud I am.

[Sally44]

My own son usually answers "I don't know" to most questions. It takes him a while to work out his answers, and as you save above, you don't know what you don't know. You would have to have very good theory of mind to identify what your major issues were, which those with an ASD tend to struggle with [theory of mind that is].

 

Standardised Assessments are set tests. It is a test written up by the professional body ie. College of Speech and Language Therapists, or College of Occupational Therapists, or British Psychology Society etc. It is a scientific/medical way of assessing certain skills.

 

So, as an example, with a speech and language standardised assessment [such as ACE II or CELF 4], the child would be assessed for their comprehension skills, inference skills, word meanings, word similarities, narrative skills, formulated sentences etc and many more skills. So a child that is reading above his age would be assessed to ensure they did understand what they were reading.

 

And by reading a narrative to a child and then asking them set questions etc they get scores.

 

These are very precise assessments. Things have to be done in a specific way. Questions asked using specific wording. And the child continues with the assessment until they have got a set number of questions wrong in each skill set. So it means that results will be uniform regardless of who carries out the assessment. So it is not open to individual interpretation. It is a set score, a set result. So if the same assessment is carried out a year later, you can measure if the child has made progress.

 

From the results you will know the strengths and weaknesses your child has, and to what degree. So I know what my son has severe difficulties with, and I know what he excels at. Knowing those scores helps the school staff [teachers and therapists] to set the work and therapy so that the child makes progress.

 

So, as an example, if the assessment showed that the child have severe difficulties with inference, you would know that giving the child information and then asking them to write an essay to answer a specific question would be difficult or impossible for them. Because although the child might be able to repeat verbatim what the information was, they would not be able to pick out the salient points from that information to write an essay.

 

Does that make sense?

 

With Cognitive Ability Standardised Assessments it can again highlight strengths and weaknesses and identify specific learning difficulties.

 

So, a child [like my son], who is not achieving academically can be assessed using standardised assessments which could give a result that the child is around average cognitive ability [so not low IQ], and therefore the reasons they are not making progress academically is due to problems with short term memory, working memory, severe dyslexia/dyscalculia.

 

That information is very important, because otherwise the assumption could be made that the child is just not very bright and that is why they are failing. Or if a child has exceptional abilities, and yet is not engaging that they are lazy, or disruptive, when actually standardised assessments could prove that they had real difficulties with certain things that were causing them to refuse to engage because they could not do it.

 

For example a child with dyslexia might be accused of being lazy, underachieving, not paying attention. When the reality is that the child cannot read/write and so they avoid this activity. The child does not know they have dyslexia if no-one assesses them, and so they might assume they were stupid, or bad, or whatever. But they would try to mask their difficulties as best they could by memorising things, but inevitably they would fall behind and struggle and, depending on the severity of the dyslexia, they might refuse school and become disruptive - not because that is what they want to do but because they cannot do what is being demanded of them, and they can see that the other kids can do it - but they cannot and they don't know why.

 

Once a child has been diagnosed with dyslexia there are lots of things that can be done to help them. But until they are assessed and diagnosed they won't get that support.

 

I'm not suggesting your child has dyslexia, but just trying to show you how a certain type of difficulty can affect all aspects of learning.

Edited May 8, 2013 by Sally44

[susiemumof3]

Firstly, thank you to both sally and shnoing for your replies. It is much appreciated!

An update from our visit to the child development clinic and the paediatrician today;

J came happily to the appointment and seemed quite buoyant, until we reached the waiting room that is, then all hell broke loose. He was crying, pleading to leave, arguing and headbutting the chairs. I, of course remained calm and assertive. The doctor came but and invited us in, but j refused to move or to look up, just sat there crying.

I went in alone but we left the door open. We discussed recent developments most of which have been positive, which I put down to a change in my own attitude and j's subsequent improvement of trust in me. We talked about the most recent reports from various professionals and then j skulked into the room, he would not answer questions, would not respond and sat crying quietly.

We talked some more about his lack of interest in anything aside from computers and then discussed how he will reluctantly relate his problems to me in his own time, but with me facing the wall. This made the doctor sit up and listen.

We chatted some more and he decided that an mda meeting was required.

He is also going to make a second referral to the edpsych for an ADOS. I had to ask him to repeat himself as I thought I had imagined it. Finally, we seem to be moving forward. Obviously, the ADOS may indicate no asd which is absolutely fine with me. I am at the point though where I know there is a problem somewhere and for his sake we need to find out what, especially as secondary school is looming.

So what I am trying to say is thank you.

The support on this forum has been invaluable, and I feel that as a result of advice and support I have received, I am better able to support and understand my son.

I will of course keep posting and share the results of the next steps.

Thanks again,

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