Saturday 12 July 2014

Impaired Executive Functioning - time to ditch the briefcase?

It's been a week since I went through the results of some testing H had done when I saw his Psychologist on Monday. And it's taken me that long to process the (extremely helpful) information.

I learned that H has poor Executive Functioning - which is often seen in children on the Autism Spectrum and in those with ADHD. But what does that MEAN?

Impaired Executive Functioning - Time to ditch the briefcase?



Image courtesy of savit keawtavee / FreeDigitalPhotos.net

What IS "Executive Functioning"?

Executive Functioning is a set of mental processes that helps connect past experience with present action.

It is used to perform activities such as planning and organising, paying attention to and remembering details, and managing time and space.

If you have trouble with executive function, these things are more difficult to do. You may also show a weakness with working memory, which is like visualising problems and planning in your head. This is an important tool in guiding your actions.

As with other learning disabilities, problems with executive function can run in families. It can be seen at any age, but it tends to become more apparent as children move through the Primary Years.

How does this impact on our son?

I have to admit I have a healthy scepticism for psychologists. Too-brief encounters invariably based on a subset of assumptions brought to the meeting on their part have led in the past to half-baked notions which rarely apply to my child. But THIS one is Gold. She gets him/us and took a whole hour chatting to learn more about what makes him, and his family tick. Not in a nosy "how deep can I dig" way but in a profoundly sensible, academic and purposeful way and very quickly saw a route through to possibly help him, hence the testing.

It's not unexpected with Autism or ADHD - so when both are present impaired executive functioning will likely be an issue to some degree. But no one had ever mentioned it to us before. Interestingly sometimes it can be confused with ADHD or ADD and may be the real issue which prompts an incorrect diagnosis.

As "ADDitude" website says:-
"Children and adults with executive function disorder (EFD) have problems with organizing and schedules. They may also have attention deficit hyperactivity disorder (ADD/ADHD) and/or learning disabilities, but not always. ADHD is a common misdiagnosis for those who are actually living with EFD."

The Tests

H had to plan a route through a zoo with a few key requirements. He just couldn't do it - it took several tries and every time he rushed through and got in a muddle. Then he had to work out how to release something locked in via a series of puzzles - which he found very easy individually but the sequencing and planning really stumped him. There were several other similar tests in which he performed much the same.

So no career in business then?!!
So maybe we could be ditching the briefcase as a diagnosis of Impaired Executive Functioning has been given but not as you might expect - do we ditch the ADHD diagnosis?



Certainly some should, having been incorrectly given an ADD or ADHD diagnosis because their impairments are not thoroughly investigated, since ADHD is so superficially similar in many ways.  But we don't think that is the case with our son, and neither do the professionals. His diagnoses stand, with the additional executive functioning impairment.

What this means for us.

I'm actually really excited about all this. That might sound daft but the thing is, nothing has changed. H is the same child I've mothered for twelve and a half years. He's still gifted and talented. He's still unbelievably skilled with computers and with his degree from the University of YouTube phenomenally knowledgable about so much. (Granted being able to speak Elvish and draw a map of Middle Earth accurately without looking are not crucial life skills but he's smart.) I have no more or less worries than before this information.

But information truly IS power. Because now we have more understanding we can help him more appropriately. He is completely unable to pack his bag for school, get himself ready in the morning remembering everything he needs to do. He cannot go out to meet friends without only one thing to remember, and everything else taken care of. He will honestly wander up and down the street unsure of where to go next if his route is not planned for him. He cannot remember, record, plan and execute homework, prepare for tests and needs a phenomenal amount of additional support.

  But the key thing here is that once that support and acceptance is in place, the focus can be on what he can then do with it, rather than why he cannot do without it.

So now we make sensible strategies to support him - rather than  constantly lecturing him on how to improve, nagging him for losing stuff, supporting teachers giving detentions for homework not done despite considerable support..... the emphasis has been constantly on what he ISN'T doing, what he SHOULD be doing and trying to make him meet targets his peers do.

It isn't going to happen. 

At least not in the same way.
And taking that constant cloud away from him - and us- is amazing. So liberating.
I can stop berating myself for his lack of organisational skills, my apparent failure to help him meet school targets for homework and preparation, for his inability to plan and prepare and grow more independent. Instead, I can slip a few support mechanisms in place, accept my parenting role isn't likely to change any time soon and focus on what he CAN do, what he CAN improve and know that in time, he will get there.



38 comments:

  1. Your son sounds like a great guy, I love the idea of being able to draw a map of middle earth and it must be a relief to know how to deal with his lack of organisational skills. Focussing on the positive is definitely the way to go.

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  2. Interestingly we have had a similar diagnosis from J's psych - together with his Aspergers diagnosis - fortunately he has inherited the family drama gene and that's where his career path with lie, line learning proves difficult but fortunately he can see the point in it. great post x

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  3. It must be great to have a better understanding of him and what you can do to help. Children are all unique and have different skills and disadvantages. I am sure with your help he will grow up to be a fab man

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  4. Thanks for this post, so interesting to me as my son has very similar difficulties, and dx of AS and ADHD (although the ADHD dx has never felt quite right to me). It's great that you have some new ways to support your son, I'll be very interested to read more about it.

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  5. Elliot has the exact same problem. It also was a revelation. He also couldn't do the zoo problem. The psychologist said that interestingly he tries to get around the lack of planning by making constant fast decisions as each path is shown to be wrong. To the untrained eye it looks like he can plan, but in reality he is trying and failing different things at fast speed until he gets it right. It's the one thing that everyone finds hardest to accept though... that their inability to plan and organise is not their fault any more than it is a visually impaired person's fault that they don't see very well. Even Education psychologists struggle and tell me that Elliot needs to learn how to organise himself before secondary school.

    I hope it helps Harry. It'll certainly help you. Was it our conversation that prompted the testing? I'm sure this post will be a lightbulb moment for many parents, so well done for writing it

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    1. Thanks Renata. No it wasn't our conversation, because I didn't actually realise that was what they were testing for at first! Once the psychologist explained I remembered that Elliot had the same difficulties. Harry compensated in exactly the same way interestingly, rushing through lots of different options and the psychologist herself thought at first he was planning in doing so. I hope Elliot enjoys secondary school, I disagree with your Ed Psych as Harry's school have gone out of their way (mostly) to support him with his organisation. Little is expected of him by most teachers in that respect. I am going back to focussing on one thing to remember/organise at a time, reduce my expectations and focus on supporting him in that way to achieve more in others. It's exactly as you say - it's not something they have control over!

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  6. Gosh, Kate, thank god for your new psychologist - knowledge really is power. Your son is super smart and as someone who spent a lot of time in a university he's sounds very similar to the PhD students (and some of the professors!) I used to work with... One of my friends could draw every F1 track (including variations depending upon the year you gave him) from memory - not especially useful but still really cool! I'm so glad you are able to approach supporting your son from a more positive angle, it should make such a difference to you all :) xxx

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  7. That must be such a relief to know what diagnosis your son has. There are a lot of children out there with difficulties that are miss diagnosed.

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  8. So pleased to read of a more positive path for you and your son x

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  9. What a luxury to have such much time with a psychologist who actually 'gets' your son. There is so much box ticking and labelling these days that I wonder it if does more harm than good. At least now you can move forward in a positive manner.

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  10. What an exciting diagnosis for you, I just love your positivity about it! You are so, so right...now the focus can be on getting exactly the right support for him and on all the amazing things he CAN do. Well done for fighting his corner so thoroughly.

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  11. That's really fabulous that you now have more information and any help he needs can now be tailored to his specific diagnosis x

    http://www.youbabymemummy.com

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  12. That is very interesting, my son is likely on the spectrum, although due to him (mostly) coping well we haven't chosen to pursue a definitive diagnosis unless we find he hits more problems along the way. I recognise him in some of what you say - he could draw a map of any given Mario game from memory, but cannot remember homework and gets in a state over constantly lost PE kit. I find it frustrating sometimes as he gets very upset when lack of organisation means late homework or getting in trouble about having no PE kit, but equally seems incapable of becoming more organised - I have often said he has to pick - either get more organised or accept the side effects of disorganisation, but now I am wondering if perhaps he has an actual problem and I should be a bit less mean about it!

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  13. Sounds like you and your son have a lovely relasionship and as you said nothing has changed he is still your son but atleast you have some answers and information! xx

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  14. Sounds like a really useful meeting, glad you have found someone who understands.

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  15. You must be relieved to now be able to see how best to help your son achieve his very best. I have never heard of this disorder before but it rings many bells regarding my eldest. I am always nagging him about how his school bag is not organised and his school work is not done. I will now consider if this is all part of his asd and see how we can help him manage it. Thank you.

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  16. It's a HUGE relief to know something like this - as you said it totally changes the pattern of disorganisation, parental frustration, another lecture then a repeat of the whole performance, again and again and again. As someone with Aspergers who grew up undiagnosed, I experienced the confidence-crushing scenario of never being good enough at things and believing I was a lesser person because of it. Unfortunately for me, that negative self-view is now deeply ingrained and I have to work VERY hard to catch and correct myself when start down that path of self-recrimination. Information IS power, the value of knowing something like this can never be underestimated and can prevent others from living a life of pain and regret.

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  17. My son has ADHD and he has very similar difficulties with his organization skills, homeworks, etc. It is hard, especially because his father doesn't want to accept the diagnosis and there isn't much help from the school. But he is amazing kid also, and he tries so hard. Sometimes it hurts so much to see how hard he tries and how frustrated he gets with himself because he won't be able to get himself organized no matter what.

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    1. It is so hard when family are not supportive, just makes life harder and more complicated than it need be. Watching them struggle and get frustrated with themselves is so tough, after this we are going to adopt a completely different approach :)

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  18. It is great that you now have a better understanding of his behaviours. You are right, knowledge really is power. Now you will be able to support him in new ways. X

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  19. Really interesting read. I love your attitude to it all and think this will inspire and help others

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  20. Your attitude is so so inspirational. He is very lucky to have such a dedicated Mum. This post is so thorough. xx

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  21. So glad you finally have some sort of answer, I hope you don't mind but have passed this post onto a friend of mine who has been having a few issues with her son and I think this might help. Great post Kate xxxx

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  22. It's great you now have a diagnosis for your son. He's very lucky to have a supportive mum. X

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  23. Anyone who can speak Elvish gets a thumbs up from me. It is such a shame we take a stringent view of what is considered 'normal'. If we become all-encompassing, life would get so much easier for everyone. Just my opinion x

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  24. Your son sounds like an amazing boy and it must feel great for you to finally have a diagnosis and some answers so you can put the right measures in place to help him. He's very lucky to have such a supportive and dedicated mum xx

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  25. It must be such a relief when you talk to lots of different people and finally find someone who 'gets' your child. We all need a person like that, who takes the time to understand, in our lives!

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  26. I love seeing all the positive points in this post. I'm so glad you're now able to put plans in place to help him further :)

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  27. At least you now have a diagnosis and some answers so you can move forward and help your son as best you can

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  28. This is such a relief to get a diagnosis so you are able to put support structures in place and work with your son to help him achieve his own goals in the future. x

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  29. Thanks for sharing such an iinformative post and making us aware of this . I am so glad that you are able to help your son achieve his full potentioal now.

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  30. This is an area I don't have much experience in so it was good to expand my reading with an informative post! Thank you.
    I've stopped by from #PoCoLo and have shared this post via G+ too :-)

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  31. This is fascinating and I have to say I have not heard of it before though it does make sense. Must be such a weight off knowing that there is no point nagging about some things and that he just isn't able to do them! Hope this diagnosis helps with him getting the right support he needs, sounds like a very clever kid :) xx #pocolo

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  32. Information is power! You have definitely summed it all up there. I felt the same when Jumpy was diagnosed with allergies. Nothing changed but I could look into things, had a list of ingredients to avoid. I am impressed your little man can speak Elvish and draw a map of Middle Earth accurately! Sci-Fi enthusiasts like hubby would love to be able to do that! #PoCoLo

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  33. I'm so glad you have a diagnosis now, I think that's half the battle sometimes! x

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  34. The amount of knowledge out there completely astounds be these days. I think this is going to be so helpful for you (and him) on many levels. At the very least it will help you understand how he 'ticks' which as parents (and teachers) is invaluable. Sounds like you've got a very intelligent boy there :)

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  35. There is power in knowledge. Now you can look for things to help your son and hopefully there is something out there that can help you achieve this
    =) #pocolo

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Many thanks for taking the time to comment, I really value your responses.

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