Keeping a diagnosis secret or letting it all out?

[ihatecbeebies]

I'm currently going through the diagnosis process with DS just now, he has just started primary 1 and we think he has AS, developmental dyspraxia, there are talks of ADHD, and he has also has a communication problem. He is a lovely friendly boy but has difficulties in school and may come across as a 'naughty' child.

When I discussed the possibility of the other children in his class finding out about his difficulties the HT said that other children throughout the school differ in whether they have told the other children in their class or not about their dx, some prefer to keep it secret and others prefer to tell their class.

I was wondering how other parents and their DC cope with their 'invisible disabilities'. Do you find it better to not say anything about dx to anyone or have you and your DC found things easier to talk about it?

"Living with an invisible disability, as I do, my three DSs do and my Dw do, does not mean that our disabilities do not exist, as you have suggested."

Could you point to the part of my contribution to this thread, where I have suggested that your disability does not exist? I haven't, not once. In fact, I am saying the complete opposite. I am saying that the moment your APD manifests itself in a day-to-day situation, it stops being 'invisible' and becomes 'visible'. The only issue then is whether the onlooker 'sees' the manifestation of APD, or sees ignorant behaviour, or sees rudeness, or whatever conclusion they may jump to.

I am saying that as parents, we have the choice to either get cross because they jump to the conclusion that matches their experience (ie. the child is being like 99% of other children = naughty behaviour) or we provide them with one step on the path out of ignorance, by simply saying 'oh x isn't being rude, he has APD, so he didn't process what you said....' or 'oh, sorry DD1 touched you there, she has SN and is really very tactile', etc.

I am saying 'as parents' because this board is about having children with SN. I also don't think you can say "being a child with an invisible disability is nothing compared to being an adult living with an invisible disability." It is nothing compared for you perhaps, but there are many adults who have disabilities who find it much easier to cope with their disability because as an adult they have the power and resources to develop coping strategies.

An example, I would say, is Amberlight. She is an amazing woman, who openly says she struggled in childhood, but now has a team around her that enables her to reach her potential and overcome the barriers that her disability tried to construct.

I referred to ASD because the majority (almost a vast majority) have experience of ASD on this board. My own daughter doesn't have ASD as a dx. She has 'squiffy brain', but even after 3 years of knowing my daughter has 'squiffy brain', it won't fit neatly in a box. ASD is, at least on here, a tangible dx.

Incidently, genuinely, I hasten to add: Is there any link between APD and colour processing ie. visual processing? Because twice I've tried to visit the APDUK website, and the vast array of colours, bolding and underlining is quite overwhelming. I noticed though, that there is a monochrome version, which I found interesting. However, the text is still bold and much smaller on the monochrome version. I personally found that I couldn't get past the presentation to read the facts. But, I was wondering if there was a good reason for the format, given the intended audience is people with APD?

Lougle

The APDUK web site is designed to be APD friendly, so we use multi coloured fonts for each new sentence which enables those who have APD to use the alternative visual coping strategies to recognise when a new sentence begins or the sense of what is being said may change. So the whole web site has been designed in consultation with adult APDs to demonstrate different text coping strategies. The mono -coloured section is for those who may have visual processing problems, especially for visual dyslexics.
Those who have APD have problems processing log passages of plain text, especially long paragraphs. The web site was more of a rainbow in the original design, but after consultation with "Contact a Family" who provide web site design advice for voluntary organisations, resulted in what you see now. So you have to understand the nature of APD to understand how we prefer text tot be presented as per the APDUK web site.
Young APDs prefer letters in different colours, then vowels and consonants in different colours, then nouns and verbs etc in different colours, then phrases in different colours, and eventually adults, like me who prefer sentences in different colours.
It can make reading some of the long posts on these forms very difficult as it is not possible to reformat the text on this site. So the long threads I do reply to sometimes require a copy and paste to word processor where i can change the colour of the fonts as per the APDUK web site so that i can understand a post. very laborious so not done that often.
But unless you understand the nature of my particular invisible disability you would not understand the problems involved.

"But unless you understand the nature of my particular invisible disability you would not understand the problems involved."

That, dolfrog, typifies the central issue with the subject of this thread. The reason I asked you about the site, is that because I recognise my ignorance around your particular condition, and because I had recognised that for me the format of the site was absolutely inaccessible, instead of just thinking 'wow those people have no web design skills whatsoever', I paused and asked myself the question 'is there a good reason why it is like that?'. Because I didn't know the answer, I asked you, the person who most prolifically posts on APD, and has disclosed himself to have the condition.

However, instead of simply answering my question, you have added a rather inflammatory suggestion that people who don't have APD couldn't possibly gain an insight into your condition. Well, you're right. Unless you explain it, I won't do. I would not have made the link between 'auditory processing disorder' and what to me sounds like issues with visual processing from your explanation above.

Additionally, I would not have realised that something visual, such as reading, had an auditory component, although having considered it, it makes sense, because I know myself that I read aloud in my head, so in a sense, I am 'hearing' my own voice, even if the speech element of my voice is absent.

It just goes to show that what is 'enabling' for one set of people is 'disabling' for another. I genuinely couldn't read the information on the APD website, because just reading the front page made me feel a bit sick and I could feel the start of a migraine (I am very prone to them, and even watching vivid TV shows can be a trigger in the right circumstances).

Lougle

Like most I knew little of this until my son was having problems at school, and until I was 40+ I thought everyone else was very much like me, and I explained the differences i had noticed down to being left handed. And It has only been since my own diagnosis of having APD at 49 that I realised how different i am, and only wen having take on the BDA, members of the SENCo forum, and teachers etc on the TES forums did I begin to understand that APD was a cause of dyslexia and trying to find out how we learn to read, which is one of the reasons I spent so much time reading research papers in recent years.

A brief summary, reading is about decode and recoding the visual notation of speech, trying to understand the ideas others wish to communicate using this form of man made communication. There are many writing systems, or systems of graphic symbols used to represent the sounds of speech, we use the Latin Alphabet, and we use English the most complex language, deepest orthography, in the Latin Alphabet writing system.
As part of our evolution we have used communication using gestures, cave paintings, pictures, sounds, speech, and more recently a visual notation of speech (the written word). At birth any child can potentially speak any language, but most will only develop the cognitive skills to use their parents langauge, and/or the language of the society their were born into. Those who have APD have problems processing the sounds they hear, and there are subtypes of APD, or various issues which can cause these problems (initially just to get APD recognised in the UK we have glossed over the different subtypes, APD is complicated enough to explain without going into the subtypes). So an infant that has APD will have problems processing their parents speech sounds, and therefore have problems reproducing their own speech. One the problems is processing the gaps between sounds, that can make up a word, so we tend to only be able to reproduce the whole sound of a word (Even adult APDs can not phonetically sound out new words). So when reading we can only match the whole sound of a word to the whole shape of the graphic symbols used by our society to represent the sound of a word, which also means that we are not able to use phonics. And you are correct about how we all sub-vocalising when we read text.

You may find http://www.diigo.com/list/dolfrog/key-references my collection of Key References explains this better than i can ot you could have a look at some of the research paper collections on my Communication and Neurology page of my PubMed research paper collections web site, which can provide even more detail.
I will PM the other link which the owners prefer not to be advertised.

Lougle

"It just goes to show that what is 'enabling' for one set of people is 'disabling' for another."
A very insightful statement, and one of the reason why so many disabilities are overlooked or even ignored. Many of the newly identified and recognised disabilities can create problems for some of the established disabilities, syndromes, spectrums, etc.
So Auditory Processing Disorder poses a real problem for the UK Dyslexia industry, which is based on a remedial program, Orton Gillingham. I believe things have now changed, but they were only diagnosis those who could benefit from the program as being dyslexic, which would exclude those who have APD as the cause of their dyslexia, because the Orton Gillingham program is based on phonics, and those who have APD can not use phonics. Which why so many think that dyslexia is only a visual processing problem. So the the UK dyslexia industry do not want to know about APD, nor that APD is an underlying cognitive cause of the dyslexic symptom. Which really goes against current international dyslexia research.
There are three cognitive subtypes of developmental dyslexia: auditory, visual, and attentional; and the support requirements for each subtype may conflict with the support needs of another subtype or even make things worse.
There is one other area where APD is one of the many underlying cognitive causes of communication processing problems, which dominates this forum, Autistic Spectrum Disorders. Again recent research has identified Auditory Cortex issues and ADHD issues are part of the underlying ASD communication problems And that ASD will become about autisms or more specific communication disability combinations, which will probably relate back to your statement above.

So we all have to try to understand the differences of others both their different strengths and weaknesses, and how the are best able to work around their deficits / disabilities.
Not too sure if you will be able to navigate these links but they are to the web pages which are me friendly, someone who has APD and uses Visual-Spatial coping strategies to work around their disability.
This is the home page of my own web site
This is how i prefer a links web page to be set out (not so much about the actual link topics)
and a revamped web page which provided the information from the USA to help my DS1 before we founded APDUK in 2002 My Favourite (C)APD Links

My ds has some AS traits and is dyslexic, and there are times when it is very useful to tell people that. It helps them to understand that there are some areas where he struggles and an average child might not. He had a child in his class last year with ADHD and his mum is quite open about it. I found that useful in talking to ds about him and how he might think or behave (they had a bit of a love/hate relationship, lots of sparks).

At cubs there was a kid who just 'wasn't quite right'. My nephew is autistic and I wondered if there was some sort of social communication issue with this child, but as nothing was mentioned (even by his mother when speaking to me about some of the problems he faced making friends) I came to the conclusion that he was just not very nice. Then I found out later (after he'd left the group) that he did in fact has have a diagnosis of Aspergers. It would have been really helpful to know, and would certainly have changed the way I behaved toward him and how I would have advised my children (dd found him quite scary as his behaviour was really inappropriate at times). However I also found out that the group leader did know about it and had decided that it wasn't a real diagnosis, so clearly it doesn't always help :(

dolfrog it's always interesting to read your posts on dyslexia (the majority of boys/men in my family are dyslexic). I think of the three types you talk about the attentional is the most likely, but I've not found anything very much to read about it.

nooka

you could have a look at my PubMed Collection Dyslexia and Attention (currently my web site link does not work)

Slight side-track here, but since we are discussing visible and invisible disabilities, can I just point out that a physical disability can also be invisible? And that children with invisible physical disabilities are also liable to get misunderstood (though more likely to be told they are just making it up).

I work with a child with adhd and as. Certainly none of his peers know of the dx. He is in year 2. The teacher and ta dont say anything to the other chiodren about the child in question at all. All the chiodren are obviousoy aware of the support he gets but they dont question the whys or wherefores. The parents of the other children are very vocal though. The child knows fully of his dx though which doesnt help the situation at all though (he thinks he can get away with certain behaviours because of his dx which his parents have explained to him). Hth.

True, cory. Didn't mean to neglect all the medical conditions and disabilities that are also invisible. In fact I guess they are even more invisible.