Confused: Assessor had thought ds was dyslexic, assessment says no but he still can't read...

[yawningmonster]

Short history
DS is 7 and has Aspergers.
He has been assessed for Specific Learning Disabilities and at the time she said that all indications were that he was dyslexic. She has just rung and said he is not dyslexic according to the testing (Woodcock Johnson III). At the time of the assessment she said she thought he had ADHD and wanted to refer him on.
The original psychologist who diagnosed Aspergers disagrees, his teachers disagree, we disagree. She said again that he will not learn with out medication. While this statement terrifies me, dh and I don't think that medication is the right call for our boy.
He is due for behavioural optometry assessment in July and I believe that he has sensory processing difficulties (still can't handle the noise of the hoover, can't go into shops which stock spices or strong perfumes/soaps, still has major meltdowns over hair washing, hair cutting (not hair brushing as we haven't brushed it since he was a baby), face washing, textures of clothing, still sucks his thumb and chews anything even remotely accessable etc and so forth)

Anyway we won't know until more assessment is done if he has ADHD but what could be going on if it is not?
The Woodcock Johnson showed his scores ranging from average/ high average to superior range but he cannot read or write?
Please give me some hope that medication is not the only way forward...

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I think you need to separate the ABILITY from motivation and concentration/distraction.

It coukd be that he doesn't see the point, or that he can't pay attention long enough in the environment that distracts him or that he is simply not being taught right.

Even if ds does turn out to have ADHD, there are other ways of supporting him besides medication. Although I would also say not to be too scared of trialling ADHD medications as Ritalin particularly has a very short active life - ie is quick to have an effect but also has no lasting effects after you stop taking it. Some families have found that it makes all the difference to their child's ability to focus on school work.

Could you ask CAMHS or Educational Psychologist to carry out a WISC iv assessment as this will cover a wider range of potential problems, for example evaluating short term memory, processing speed as well as word recognition etc?

Other potentially useful assessments would be from a specialist optometrist to rule out vision problems and from an occupational therapist to consider if coordination problems are impacting on his ability to read and write.

What support does he receive at school and has he been assessed for a statement of SEN?

We are in NZ but his original Ed Psych would be able to do a WISC and tbh I would rather this was done in the first place but we got the dyslexia assessed through SPELD as they have good follow up but they use the WJIII over the WISC.

We are getting behavioural optometry done in July, it takes a while to get an appointment as unfortunately one of our leading behavioural optometrists was killed in the earthquake which means the one we are seeing is under a bit of pressure.

Once assessment referral comes through we will go through the hospital and I will push for an OT assessment there.

He gets an hour a week support at school and has an IEP but this will be reassessed once all the assessments are finalised.

Thanks about the reassurance re the medication but my husband would never support it and I am still very, very hesitant and well we don't really even know if that is what we are dealing with. It is hard sometimes to know where the aspergers starts and ends to as it overlaps with so many other things.

Agree with Starlight - he may not be classically dyslexic but have other issues (such as AS, ADHD, Sensory issues etc al) which impede his ability to focus and learn. Medication is often not the first resort in many countries (not sure about NZ) for Autistic Spectrum Disorders or ADHD but he might well need a more specific diagnosis and therapy to help him overcome some of the possibilities.

OK so plan of action

1. Go ahead with behavioural optometry appointment
2. Either go back to Psychologist for WISC and/or go through hospital for ADHD and sensory processing assessment. I am very aware that the hospital process is very long here but again the earthquake knocked out one of our diagnostic centres and I may have trouble finding another one.
3. We as a family have also decided to act as though he does have dyslexia and get him intrinsic phonic training

Does this sound about right? Anything else we should consider? I hope you are right about medication not being the first resort LIZS as the assessor has really put the fear up me that he will never reach his potential without medication.

Sensory assessment by an OT may also be helpful.

thanks cornsyilk I am hoping I can do that through the hospital since we are going down that route due to lack of other diagnositic facilities so might need a multi team approach with psychological and ot assessement.

You are right to just believe he has dyslexia. And treat it as such.

There isn't actually a test for dyslexia. Nor a defn of dyslexia. There are many defns and many diagnostic criteria. Each EP is free to define it and dx how they please.

There is every chance a different EP would have done the same tests, got the same results, and interpreted those results as a dx of dyslexia.

One of the many defns of dyslexia is 'a person who struggles with reading and/or writing despite adequate tuition'

I'm fairly sure that your DS meets that criteria, and therefore does have dyslexia.

However a dx, or lack of dx, doesn't help you particularly. There is nothing different you do to teach a child to read who is struggling, and to teach a child to read who is dyslexic.

Is he on Omega, zinc and magnesium?

Indigo I was hoping you might see some of this as I respect your knowledge and advice.

Yes to Omega and he has zinc and magnesium as part of a multivitamin. He also has probiotics and he is dairy free but not gluten free. (we have tried no gluten in the past for two years but it really made no impact that we could detect either in it's removal or it's reintroduction.

I have to agree that the reason for treating ds as though he is dyslexic despite the results of the wjIII is founded on the fact that dyslexia here is defined as the unexplained inability to read and write despite average to above average IQ which is exactly what the wwwIII has told us...he is average to above average with some subscores in superior and yet he can't read??? How can that not indicate dyslexia. Also he has very poor phonetic knowledge despite desperate efforts on my part...he knows individual letters but cannot absolutely cannot blend so relies on his memory and building his sight words rather than on decoding, onset and rime etc.

btw I didn't mean to say or imply that I didn't respect knowledge and advice from other posters. I have just seen indigo post on several of these issues and have been able to apply some of her knowledge positively to our situation. I hope to do the same with advice given from all posters.

:)

I can't remember where I left off our last conversation. So excuse me if I repeat myself.

Out of all the things I tried only 2 things helped DDs dyslexia.

1. Auditory Integration Training
2. Tinsley House (which included vision therapy)

DDs severe dyslexia is virtually cured now. Her processing speed, memory and word finding issues are all gone now. And she is now learning to read and write. (obviously once youve cured the problems causing the dyslexia you still need to learn to read and write)

My DS has done those same therapies (and also retained reflex therapy as well) and had a vast reduction in his ASD symptoms.

So, theres every chance those same therapies would help your DS - but I don't know if they're available down under.

You can start doing TH by following the advice in 'the brain food plan'

There are lots of listening therapies. I'll google and see if I can find any near you.

Feel free to PM me for more specifics.

Ok, TH can't be done in NZ. But he does do skype consultations. And everything you need for the first 2 months is in The Brain Food Plan

You can't do AIT in NZ either, but you can do a variety of other listening programs.

Google
Tomatis Method
Auditory Integration Training
Listening Program
Therapeutic Listening

I found the following people (which aren't anywhere near you :) )

www.joyacentre.co.nz/
www.family-focus.co.nz/index.html
www.developlearning.co.nz/listening-therapy/about

But I'm sure if you spend longer on google you can find more.

I'm aware my advice has changed over the months - that is because I keep on trying different things.

TH is absolutely amazingly good. A number of MNers are doing it now, and they're all very pleased. I can confidently say I'm sure it will help your DS.

AIT is a bit less clear cut. I've found it amazingly good. But not everyone else has. And certainly the competitor products have people who are very happy with it and people who don't think it made a difference.

I think you do need to do a listening therapy. And you may need to do several if the first one you try doesn't work. If you were here in the UK I'd be 100% confident in recommending the place I went to. But you're not.

TH incudes a vision therapy, which is why I'm not talking about separate vision therapy. Before doing TH we did do vision therapy through a behaviour optometrist - and it didn't work at all. So it seems to depend how good your optometrist is as to whether or not the vision therapy works.

(Whereas the vision therapy we did through TH was very effective)

Brilliant news.

The vision therapy that DS and DD did through TH which was successful can be done in NZ!

You need to do 'Home Therapy System' - and here are a list of places in NZ that offer it: www.homevisiontherapy.com/doctorlist2.php

:)

It has been brilliant. 20 minutes every day at home, for about a month, and both of their vision (eye tracking and convergence insufficiency) has improved tremendously.

It's really worth pulling out all stops to try and get him this vision therapy. It is absolutely the best one.

argh everything is in the North Island but have added them to the list of things to explore.

The behavioural optometrist we are going to sounds from word of mouth to be brilliant and when I made the appointment I talked a bit about ds' aspergers and that he maybe somewhat less than cooperative for the appointment and they took it all in their stride, they are well practiced at assessing children on the spectrum and pretty much reassured me that anything that ds did or didn't do would be ok. I will ask about the home therapy system and see if it is something they offer.

I have also managed to track down some highly recommended OT's at a place called the Helios Integrative Medical Centre. They do reflex integration and sensory processing therapies so I am hoping they can do the auditory stuff as well...I will investigate further. At this stage we would be hard pressed to get him to the North Island but will do if we can't find the right stuff here.

Joya is in the South Island!!! Not the same end of the South Island that we are but at least it would be drivable (well 6hrs but still more accessable than North Island)

I think you're on the right track.

A lot of patience is needed. (and money and time and energy)

It's taken me over 2 years to get to the point where I'm relaxed about DS and DD.

Most of these therapies have to be done one at a time. And frequently they take a year or so.

The OT and The optometrist sound good. Start with them. Joya may or may not also be good.

Hopefully in a years time you will have been able to do a vision therapy and an auditory therapy and a sensory / retained reflex therapy.

(then after those you can do TH :) )

Because unfortunately that is what you need To do - all of them :)

Of course the good news is - if you do do all of these therapies theres every reason to believe you will see vast improvement.

thanks Indigo...if ds has taught me anything it is patience though I apparently need constant practice at this skill as I haven't yet entirely mastered it.

It feels good to have a plan, particularly one without medication. I am quitely hopeful about the ot's, they sound as though they do some great work with reflex retention and sensory diets and the optometrist sounds good too but I am not as convinced that ds has issues with vision whereas he has definate sensory issues.

In regards to teaching him the phonics I will have to source someone outside myself as while I have tried my best he just will not cooperate for me to learn it, he just gets frustrated and melts down which I think he may do less with someone more distanced from him so I will look into one of the SPELD tutors and what they can offer.

Don't get a reading tutor yet. Save your money (for therapies)

He won't be able to read till you've fixed his vision and auditory problems.

Once those are fixed then it'll be worth getting a tutor.

Ok so we are waiting until July before the fist appointment (Optometry) what can I do in the meantime...not good at not doing anything if I can be helping him in the meantime. I am doing heaps of midline crossing, vestibular and proprioceptive stuff with him as he enjoys it and well it can't do any harm.

it is not neessarily the case that reading will not happen without vision/auditory therapy.

I have not (yet) done any vision or auditory therapy with dd1. she had the same issues as your ds, yawning, with knowing phonics inside out but being unable ot blend.

we (us, school, tutors) have addressed this via various different methods - lots of whole word reading as well as building up and blending etc. lots of recognising the initial/middle/end sound from words, and matching up pairs of words and rhymes etc.

dd1 can now read, and she reads as well as dd2 (5, in reception, reading at a good level), so about 2 years behind where she 'should' be. given that dd1 has severe ASD, this is little short of a miracle. she can work out new words (short ones) and can give a plausible attempt at longer words (she sounded out(got all the individual sounds right first, but then blended): 'ffff....iii....sh....ed' for 'finished' last week, which is moving in the right direction.

it has been a long road, but she is getting there. a year ago I was convinced she would never learn to read successfully, but instead have to rely on building up a repertoire of sight words, which ahs obvious limitations. now, she walks around shops with me, reading the signs and driving me mad sounding everything out!

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I have no experience of Aspergers or ADHD, but DS1's year 2 teacher was absolutely convinced he was dyslexic - he was verbally and numerically very bright, but couldn't read and got all his letters back to front and upside down when writing. Getting him to try and read at home was absolute torture He's now year 4 (8yo) and has just been assessed with a reading age of 10.6 (apparently as far as the scale goes?) and level 4c for writing (target for yr6 4b) without any specific intervention. Anyway, just to say, sometimes, they're just getting there at their own pace.