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?

Sorry that post sounds so flat and negative. Its been one of THOSE weekends so far so ignore me :)

Its really up to the individual and the DCs circumstances I think :)

EllenJane, I understand the concept of 'invisible disability'. What I personally think, though, is that 'invisible disability' is used too widely, and that for the most part, if a disability were truly invisible, then it wouldn't need to be talked about. In most cases, for children on these boards, there are elements of their disability that become very visible when they are in social situations. Therefore, their disability isn't 'invisible'.

I suppose I am making the distinction between, say, asthma, where a person can seem perfectly fine unless they are having an asthma attack, and ASD, where the person always has the altered processing of the world.

But, it is a personal thing. I wouldn't go around broadcasting DD1's difficulties, especially when she doesn't even go to our local school. However, when she occasionally drops her sister off at school, and she's in a Mac Major to keep her safe, etc., it's pretty obvious. So, I chose to add a bit about DD1 in DD2's 'all about me' book for school. Just a simple line under of DD1's picture, that says 'DD1 goes to Special School'. It's so much easier for DD2 that way.

Lougle
"I suppose I am making the distinction between, say, asthma, where a person can seem perfectly fine unless they are having an asthma attack, and ASD, where the person always has the altered processing of the world."

You have missed out a whole range of invisible disabilities in between, such Auditory Processing Disorder, which is a listening disability and can really be invisible to others who are not aware of the related problems, there are many more invisible disabilities of which ASD is only one.

I don't think that ASD is an entirely invisible disability, dolfrog. I think by its very nature, that the pervasiveness of it makes it very visible in many cases.

I was going to post that you were wrong Lougle re invisible disabilities but I actually do agree on thinking it through.

DS if he gets a DX will be HFA or AS but enough people (adults) have now agreed with me that there is "something". If it were invisible, they wouldn't notice. However to the children in his school, it is invisible as it isn't physically obvious like a wheelchair. To them, he is wierd/unfriendly/loud/disruptive delete as appropriate. It is not clearly a disability to them as IMO children normally associate disability with physical disability.

Whilst I think Lougle is has a very good point, I do think that ASD is an invisible disability.

This is because that it isn't immediately apparent to a stranger why and individual is acting differently, nor are they necessarily going to attribute the behaviour to a disability.

Ie. if you saw DS spinning, or lying down stroking the floor or hitting out at another adult or child, the disability is invisible as people who don't know will attribute the behaviour to bad behaviour, bad parenting etc.

Whereas if an individual is in a wheelchair their not being able to walk will correctly be attributed to their disability because it is immediately apparent.

^^ That's a much more concise way of saying what I wanted to say!!!!!

Lougle, I was responding to your post,

I don't really get this 'invisible disability' thing. If it was invisible, then the child wouldn't get the dx. Therefore, it is visible.

To the 5 and 6yos in my DS's Y1 class his DX was invisible. They just saw unusual behaviour that they attributed to my DS being 'naughty.' Most parents thought the same. That is why I use the term 'invisible disability.' It is invisible to the vast majority of the general public, despite being completely pervasive. IMO, unless you have some experience or understanding of ASD, most people will think a child is merely misbehaving, not disabled, until they are quite old and the behaviour starts to look 'SN' even to them. My DS is 12 now, and still his very autistic stims are not recognised by many as part of his disability.

TBH, most of the friends I have whose children use Maclaren Majors, still have many people asking them why their child is still in a pushchair at their age, with the implication that the child is being spoilt. The general public is really pretty ignorant about disability, IME.

It's true, EllenJane...everything you say is true. However, how is it true? Why is it true?

If the stats are to be believed, the rates of diagnosed ASD in children in the UK is 1 in 100 ref. 1 in 100 is not that rare. And, if we look at the 2009 data for SEN (Table 9) we see that 20% of Statements of SEN in Mainstream Primary schools were given on the classification of ASD. A further 3% of children in MS Primary schools were on SA+ with an ASD classification.

So, we can see from the stats, that in MS Primary schools, about 23% of the SEN that is severe enough to warrant either outside support or a Statement, is ASD. So not that rare. Second only to 'Speech Language and Communication Needs'.

My thoughts are that these disabilities are only 'invisible' because we keep them hidden. When I go to DD2's school with DD1, I have two choices. People there will not know that DD1 is disabled unless I tell them. Yes, she looks 'young' for her age. If she's not in her Mac Major, her posture, gait and stance is all a bit 'odd'. People would certainly notice that her speech is immature, if she spoke. But, largely, she is the girl with a big grin.

My choice is whether I let people see her behaviour, and say nothing, in which case they are likely to assume she is 'throwing a wobbler' or 'having a tantrum', or to simply say 'she's got a disability...' or 'she has SN'.

We as parents have every right to withhold that information from strangers. Of course we do. But with every choice comes a consequence. The consequence for many of our children, is that they will be judged 'naughty'.

We can complain that people are ignorant, but if we do nothing to change that, then ASD, 'squiffy brain' (in my DD1's case...no specific dx but MRI abnormalities), SWAN (Syndromes Without a Name), whateer, will remain 'invisible'.

But in my eyes, 'invisible' just means 'not categorised'. People, being people, live their lives by categorisation. We do it all the time. Short, tall. Fat, thin. Nice, horrible. If people don't have a category to slot our children's behaviour in, the category by default that is left is 'naughty'.

We want the world to accept our children as they are, disability and all. But, we don't want to tell the world that there is a disability to be accepted. How will that ever work??

Ihatecbeebies - with the co-morbidity of AS, ADHD and dyspraxia, i think that when the difference between your DS and his peer group widens, it might become obvious. I can only speak from the dyspraxia point of view, but when a child has a marked difference in physical abilities, the other children already know that your child is different. Usually by this point, if they have already been in the same class for several years, its accepted far more easily by them than their parents. I did have 1 parent ask 'why does your boy run funny' - so i told her. She just said 'oh' - then there was silence for a moment then she came out with 'but he's really clever' (because obviously you can't be both in her world ) I just replied 'yes he is' and left it at that.

Lougle

The is a difference between a lack of aware of the existence of a disability and being able to immediately identifying those who have that disability.

Increasing public awareness of th existence of disability is the classification bit you are describing, which is about educating ALL about all of the various disabilities we adults and our children may have. So that potential friends, partners, work colleagues, employers, teachers, are aware of the various differences of support and understanding we need. Which sometimes includes those who post on this forum, who would prefer their children, partners etc to be NT.

The actual disabilities are invisible to most of the population, and it is usually only those who live with these types of disability who readily recognise similar issues of others who share their disability, or have similar disabilities. To the majority of the population our disabilities are invisible until we tell them, and explain our differences, and forms of support and understanding we need.

So unless you have an invisible disability yourself, I would suggest you be careful as to how you describe our types of issues.

Going off on a tangent I suppose. But what I think would help is that all schools could have awareness lessons on difference and acceptance of disability including invisible disability, maybe handing out an informative pamphlet or somesuch catering for the varying childrens age and understanding. Perhaps make it a parent/child talk where the parents are invited to also listen to help further advise and support any questions their child has.

Schools have health and safety talks, sex education, road safety which government find essential so why not a talk on this subject to make joe public aware.

We understand our disability and our childrens disabilities and it would help perhaps if the NT world were educated on a more informative scale rather than the odd parent/child being open about it which is a daunting task for some when faced with ignorance.

yes/no? :)

I am currently in the same position as the OP... one of my twin sons, he's 3.7, most probably will get a dx of ASD, so debating this question myself right now.

I'm sure his behaviour at times can appear very disruptive/odd/strange to on lookers, and there is a definate urge in me to defend him, for example at soft-play on Saturday, my twin sons saw a little girl who attended their pre-school, nt son called her name, then went off to play with his friend but sn son got very excited and stated spinning, flapping, screaming her name and following her around (new to me as he is usually oblivious to other children), the little girl thought nothing of this and played with him. I was happy, albeit nervous ,that he was actually engaging with another child. Little girls mum obviously wasn't happy, then came over to get her, and sn son didn't want her to climb the ramp until he had come down (big on routine and order), so started screaming "stop" at her over and over, instead of waiting she said very sternly "no, I won't" and looked at me with a "sort your child out" look on her face, then called to her daughter to come away. I immediately told her not to speak to him that way and informed her that his sn's weren't contagious, so had nothing to worry about! She still got her daughter and walked away. I honestly wanted to throttle her, this was the first time I had encountered anything like this and was shocked at the anger it provocked in me and the need to protect him.

In light of this incident, I am definately going to write to all the pre-school mums (small village) to make them aware of his sn's, I know this won't change attitudes, but will hopefully make them think before jumping to conclusion.

"The actual disabilities are invisible to most of the population, and it is usually only those who live with these types of disability who readily recognise similar issues of others who share their disability, or have similar disabilities. To the majority of the population our disabilities are invisible until we tell them, and explain our differences, and forms of support and understanding we need.

So unless you have an invisible disability yourself, I would suggest you be careful as to how you describe our types of issues."

I respectfully disagree with you, Dolfrog. I think that as the mother of a child with a disability which is at times less visible, or rather, less immediately recognisable, than others, I am perfectly well qualified to express an opinion about the impact that has on my child, and extrapolate that to other children with similar issues.

I live and breathe the impact of my daughter's 'invisible disability' daily. I see the effect it has on her, myself, my husband, my other daughters, each and every day.

It's a bit like the emporer's clothes, really. You can pretend it isn't visible, just as the people pretended they could see clothes. But the fact is, if it was so invisible, our children wouldn't need the help they need.

Who would dream of pretending that their child's inability to hear didn't exist? Who would dream of saying nothing when someone thought they were rude for not responding? No one. I suspect we would all say 'oh I'm sorry...if you want x to respond, you'll have to look at him when you speak, because he can't hear you'. Why, then, is it different with disabilities that are not as obvious as those which require physical aids for mobility?

On the visable/invisable debate...I can see both sides, on first meeting, my son's sn are not visable in the same way as the little girl who lives a few doors away, who has obvious physical disabilities would be. So invisable, yes...

However...spend some time with my son and even too the untrained eye it would become obvious that he has some sn's. So visable, yes...

That said, I believe that those of us with children with less obvious disabilities, feel the need to explain the sn's of our children, because of the ignorant/judgey attiitudes of many, who jump to conclusions towards other children's behaviour in a way they would never do if the child had a physically disabled, ie visable.

Baboos That is such a sad story, your poor ds. That woman sounds horrid, hopefully her dd will grow up to be more accepting of people with SN.

Coff33 I think that is a really good idea, children should definitely be made more aware of different disabilities.

DS's autistic traits are becoming more and more apparent, he's started hand flapping when he becomes very excited and he's becoming more rigid with day to day things like walking home a certain way or sitting in a certain seat on the bus/in class etc, and sometimes has quite immature speech and understanding that would stand out as SN.

But many other things can be put down to bad behaviour or bad parenting, like me pandering to his need for rigidity. When he gets stressed he lashes out and goes into meltdowns, hitting other children and has hit his teacher twice too and has been sent home 4 times (he's only been in school for 2 and a half months ) and that is what I'm worried about the most regarding feeling the need to tell people about his dx. I think to other people he would come across as just really badly behaved and I feel like I need to stick up for him or explain his actions to other people.

But then I think DS doesn't know about his dx, and wouldn't understand if I explained it now to him either, so I am still really torn about telling people when he wouldn't understand it himself, is that really fair? And I keep thinking that he might grow up and say 'actually mum I'd have preferred my peers not to know, you shouldn't have told anyone, that should have been up to me'.

Hi Lougle. About ASD awareness, I have to admit that before my DS was being assessed I had no idea about autism. I hadn't seen Rainman, I hadn't heard of Aspergers and my perception of autism was of a totally closed in child with no communication. How different was my DS to that scenario! I thought maybe ADHD, but never autism. It's hard to think back to that time, because I have devoured information about ASD ever since, read loads of books, life stories, Lorna Wing, been to loads of talks with people like Simon Baron Cohen, Ros Blackburn and Tony Attwood, trawled the Internet, watched documentaries, met loads of parents with children on the spectrum, and more recently spent time on here.

It's hard to believe that 9 years ago there just wasn't the awareness. The MMR 'scandal' was just getting going in the press. But I hadn't paid it much attention, after all it had nothing to do with me... My friends now know quite a bit about autism, but that's mainly due to having a friend with a DS with ASD. I do believe that the general, unaffected public have no real interest in the subject, because that's how I was.

Me too Ellen. I had no need to know about ASD. There was the boy at school that was obsessed by the tube and travelling round all the stations. Obviously at 16 in an inner London comprehensive, he was just wierd :(

I thought until 13 months ago that autistic people = learning disabled. I thought that Aspergers = Rainman. I am very embarrassed to admit that as a university educated person I had that lack of knowledge about something that affects 1 in 100 of us.

Here is another. I had no understanding at all of autism until I started being concerned about DS and that was only 2 years ago. We are a small town too and I havent come accross anyone with autism. Just 1 child with ADHD and that was beginning of this year.

Of course. It doesn't surprise me at all. Because, in general it seems, that children whose ASD is relatively 'mild' or 'moderate' or 'manageable' are 'integrated' and their dx is not disclosed. Children for whom there is no hiding their difficulties, with 'severe' ASD, have their dx disclosed, because there is little alternative. Therefore, instead of a 'spectrum' or 'range' of ASD, the public see either 'Autism' or 'Aspergers', either 'Learning disabled' or 'genius'. That is hugely speculative, but it is the conclusion I've drawn.

A bit, I guess, like the era of gay people being 'in the closet'. The only people who were 'out of the closet' were those who lived a flamboyant lifestyle of 'iconic gayness' - who lived 'loud and proud'. This means that most people thought gay= either 'camp' or 'butch'. But, as people have been more open about their sexual orientation, society is starting to understand that you can't pick a gay person out from a crowd in most cases.

I would love to think that one day, having a disability such as ASD wouldn't be something that loving parents have to choose to hide to protect their child. I would love to think that it would be just as natural to say 'DS has ASD' as it would be to say 'DS has asthma' or 'DS has diabetes' or any other life-impacting condition.

I disclosed my DS's autism as soon as I had gotten my head around the DX, but mainly because I thought it would benefit him. (It has!) The DC I support has kept his DX private, mainly because he copes well in school with support and his parents believe he would be bullied/ostracised if others knew. I don't agree as it happens, but I also believe it is his parents and ultimately his choice. Going back to the gay analogy, would 'outing' him be morally correct? Yes, attitudes must change, but would you want to sacrifice your child's privacy for the greater good?

Lougle

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. They are invisible because we do not wear big placards stating that we Auditory Processing Disorder, or a listening disability. We still have to live with it everyday, and because others can not see any visible signs of our disability they assume that we do not have a disability unless we tell them or they know us.

You may be parent of a child who has an invisible disability, so am I, but being a child with an invisible disability is nothing compared to being an adult living with an invisible disability.

If you want do do something about this then you will have to help promote a greater awareness and understanding of a wide range of invisible disabilities of which ASD is only a single area.

I was waiting in the queue in a bank the other day. A little boy came in with his mum and started undoing the tensa barrier thingy, something my ds always does. Oh great I thought normal kids do that too. The mum made a joke of it with the branch manager and then added in a clear voice, it's his autism - he does a routine with these things everywhere.

I was a bit downcast to get yet more confirmation that ds is an oddity (is it really only asd boys who fiddle with barriers?) but thought wow good for her being so open and confident about her son. Complete opposite of me.

Coming to this thread late, but lougle I absolutely agree with you I would love to think that it would be just as natural to say 'DS has ASD' as it would be to say 'DS has asthma' or 'DS has diabetes' or any other life-impacting condition.

I think the key word is also condition as opposed to disability/special needs. Certainly as it relates to ASD and other conditions that affect behaviour/communication.

As for the question in the OP. So far I have only told people when I think it's relevant to the situation. Some of ds's friends' parents know, some don't - and I only tell them if I think they will 'get it'. Some of my family don't know (eg cousin). I have only ever twice brought it up to strangers, and only because I needed a swift and unanswerable explanation for ds's behaviour (eg having a meltdown in doctors surgery with extremely impatient gp).

The difference in how people treat ds when they know can be quite marked. Eg a physiotherapist who was seeing dd for hypermobility - ds came to one appointment and was merrily chatting away to the physio, and she was treating him perfectly normally. Towards the end of the appointment she asked him a question to which he didn't respond. Can't remember what the question was but it was something perfectly straightforward and he finally gave a bit of a bizarre answer. She looked a bit quizzical so I then said "oh he has asd...". After 30 minutes of her treating him totally as she would any other child and getting more or less normal responses, as soon as I said this for the rest of the time we were there whenever she spoke to him she got down to his eye level, spoke in virtually words of one syllable and started using sign language I think he wondered wtf was going on