Stealthy and Unhealthy Mental Health Screening? NZ’s B4 School Check. Part Two: Public Perception of Stigma and Mental Health.

[Edit: My views on this have since changed in some regards, please see the post here for clarification.]

This is a continuation from the previous post, looking at the controversies surrounding the use of the SDQ in New Zealand’s “B4 School Check.”

In this post, I am turning my attention to the issues around the public perception of “mental health,” that have come up in response to the SDQ portion of the B4 School Check. The issues and arguments I bring up here and in the next post, are all taken from talk-back radio, public forum discussions, or views of the public shared in national news stories (for links to some of those sources, see the previous post).

I’ll begin with one of the most popular responses to why the B4 School Checks should not include a check for “mental health” issues: Stigma.

The argument goes like this: Children shouldn’t be screened for mental issues, because receiving a mental health label (such as autism, ADHD, or childhood depression) is stigmatizing for the child.

This argument is so clearly and deeply flawed that it’s rather too easy to knock down (but I’ll do it anyway). However, I will also give the arguers the benefit of the doubt – that they are using the stigma argument to make other points they’re not expressly stating (and that some others do expressly state) – and run through those deeper arguments after I’ve knocked down the main one. (Perhaps if you are someone who holds to the stigma argument, or can see the argument they’re making is different than that I’ll be addressing here, you could enlighten me via the comment section.)

First off, the pure stigma point. It is my view that issues to do with the mind – conditions that impact on “intelligence” for example – are one of the last ways in which society still thinks its OK to discriminate and treat people as less than human. I believe that this point is quite strongly reflected in the stigma argument (and in other arguments I’ll be looking at too). If someone has a broken leg, impaired eyesight, or diabetes, we don’t advise against diagnosing them with these conditions because of the stigma that will attach to the individual. Rather, we recognise the condition is a fact, that needs to be identified and addressed. Yet mental health issues are treated as something to be ashamed of, and that are better left unknown and unidentified. That the stigma that will attach to the child far outweighs the benefits that come from knowledge a child has a condition and the attending benefits of knowing specifically how best to help that child.

If stigma does exist around such conditions – and sadly, it does – shouldn’t the concern be about addressing and reducing that stigma, with better information and attitudes disseminated into the public sphere? To me, it’s like saying “hey, racism exists, even though we don’t like it, so let’s just tell all the coloured people to paint their faces white.” By using the existence of stigma as an argument against recognising the conditions (or rather, differences) that people have, all you’re doing is surely reinforcing the status quo.

There is one aspect of the stigma argument that I think holds water: Since the public doesn’t understand mental issues well at this point, it would be best to make sure the information about diagnoses etc are confined to professionals who won’t misunderstand and misapply the information to the detriment of the child.

However, even this aspect of the argument isn’t going to support the stigma argument here, since the B4 School Check isn’t a diagnostic instrument. It is used to identify whether a child should be further and professionally assessed for potential issues. Even if it was a diagnostic instrument, it’s not like the mental health condition is then tattooed to the child’s forehead. The child is the same child they’d been before, there is no reason for their peers and other non-professional or non-related adults, to have access to the fact that the child has a diagnosed condition.

Hidden deeper within the stigma argument, is the claim that the harms of a diagnosis (the stigma specifically) outweigh any benefits, because the conditions at issue – mental health issues in preschoolers – are themselves suspect, and furthermore that any therapies which follow from a confirmed diagnosis, are also either pointless or harmful. Some people expressly make these arguments, and they are very popular ones, particularly in relation to conditions like Aspergers and ADHD. In my next post, I will be specifically looking at these arguments as they have arisen in the public response to the B4 School Check: Do young children get mental health issues, what are the nature of those mental health issues, is it worth treating those issues, and what is normal anyway (the argument that these are just “normal” kids being labeled with conditions that don’t exist). Embedded in all of that too is the question of whether something like “autism” – one of the conditions that can be picked up as an issue by the SDQ – is really a “mental health issue” in the sense talked about by the public.

***

EDIT: Due to a huge increase in my home work-load (while my husband is away on conference), it’s looking very unlikely that I will get around to the third part of this series anytime soon. Or maybe ever. I’d done all the research for it but it’s been a few very busy days since then (and I’m still incredibly snowed under), so it’s no longer fresh in my mind enough to pull together a post, without re-reading the original sources all over again. Sorry to those who were waiting for the third installment.

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15 Responses to Stealthy and Unhealthy Mental Health Screening? NZ’s B4 School Check. Part Two: Public Perception of Stigma and Mental Health.

  1. nostromo says:

    There is a situation I know of which illustrates the folly of this, a child with SN but undiagnosed as the parents refuse to engage with anyone about it, they don’t accept he has SN (classic Aspie) and don’t want him “having a label”. Which means he gets no funding for support. So the school pays for extra support because it really is needed so that the class runs smoothly and this child and the other children can have a learning environment. The money to do that of course has to come from somewhere else, i.e. other parents ‘donations’, general school budget etc which is an unfair situation for the child and everyone else really.

    • Absolutely.

      I wrote a post a while ago about some of the reasons parents give for not seeking out a confirmed diagnosis for their child (and the fact that I generally find the range of reasons unconvincing): https://autismandoughtisms.wordpress.com/2011/01/21/fear-of-diagnosis/ . I only mention the “label” issue briefly in that piece, which is the same in many regards as the stigma argument of course. I suppose one good outcome of the current B4 School Check debates is that I had a good reason to return to the issue and flesh it out properly in this post all this time later.

      Thanks for your comment nostromo.

  2. usethebrainsgodgiveyou says:

    “Mental Health” usually means drugs. I’m no saint, I gave my son ritalin for 8 years. Is it the same to treat diabetes as it is ADHD?

    • The point about mental health and turning to drugs is a very important one; the general public (here anyway) seems to assume that a diagnosis is the same as being handed years of prescription drugs with no other interventions (either alongside or instead of drugs). Obviously this is a huge and dangerous distortion of the reality, and is an attack on those who desperately require the drugs (their use of them gets dismissed as the result of “classic lazy parents”). Just yesterday I was listening to a caller on talkback arguing (without any disagreement from the host) that youths who are given drugs to help them with mental health issues, are the drug abusers of the future! Some people have some messed up ideas about why and when medication is given to children. I should probably stop commenting on this now since I’ll just end up accidentally writing a fair portion of my next post in this comment section!

      (I must be a bit foggy in the head today, because I don’t quite get the point of your question about treating ADHD versus diabetes..? I get that it’s rhetorical, but I’m not clear to what end.)

  3. nzpam says:

    I have heard this argument about stigma and you have it absolutely right. The stigma they are talking about does not belong to the person, it belongs to the lack of knowledge and therefore fear of the unknown from others. The only way to fight this attitude is to show people that, although this person has a diagnosis of a health condition, they are still a person just like you.
    It’s a walk i have chosen to take after many years of sharing the sadness of adults in the mental health system – supporting and trying to assist them with everyday life. Most of those adults had been through the asylum system and i think this is where all this comes from. I’m in my 50’s and when i was younger that is how people with mental health issues were ‘treated’. Professionals told families to “put them away”. We are still struggling away from that lack of knowledge (therefore fear and stigma).
    Also, some of the adults i helped would now be diagnosed as autistic. They were given diagnoses such as atypical schizophrenia, personality disorder, schizophrenia, bipolar disorder – some had as many as 6 different diagnoses by the time they were adults. Autism, when i trained as a Karitane nurse as a teenager, was only recognised in a child who was non-verbal and seemed unreachable. The one child i knew, the family were told to forget he existed and he aged out of Karitane and into a childrens’ ‘home’, in other words he was “put away”. His family never visited him.
    I don’t believe autism is a mental illness, but a different neurological setup. I won’t expand as this is too long already (sorry – i’m on my soapbox).
    We think very carefully about whether or not to disclose the autism diagnosis and usually only do in general life if people seem to need an explanation for unusual behaviour. But it is essential for families to know when their child is as young as possible (i believe 3-4years-ish generally) to help figure out the best way to support their learning. Teachers need to know for the same reason.
    I’ll stop now – i believe it is those of us with the knowledge of our kids who need to be educating people about them, showing them that our kids are precious and reducing stigma one person at a time.

  4. Hilary Stace says:

    One of the problems with the B4 School Checks is that there are usually no local services to refer a child to who has suspected mental health issues, autism, hearing impairment, speech delay or whatever. Nor for parental help such as grief counselling, NZSL courses or parenting support in general. They should be using the data to ensure these services are available when and where needed – but this does not appear to be happening, leaving the situation distressing for all..

    • It’s a good and important point about the sometimes lack of services Hilary, but I don’t see that being a problem of the B4 School Check. All the check does is identify the potential problem. Even if the services aren’t immediately available, it is still important to know that there is an issue that needs addressing, and I would presume that it helps to gather the data that there aren’t enough services for those who need them. Also, I think it might be over-stating it a bit to say there are no local services available (though yes I understand your concerns); services do take a while to become available through the public sector, but are more readily available for those willing and able to pay privately too. There are also of course charities and similar organisations which make themselves available to advise and assist newly diagnosed families, so even when services aren’t immediately available, there are ways to start gathering information and to seek support.

  5. bianca says:

    The Stigma argument may appeared flawed in essence but in reality it is a strong motivator for me not to engage in screens like the B4 school check. My belief is that it does little to assist the child anyway but rather provides the label, a reason for teachers to accept a lower level of achievement from the child before they even start with them and it follows the child around forever! A close friend has two children who have been diagnosed with ‘high functioning’ autism. A shock for her, she knew there were some developmental delays but worked hard despite the lack of help after various assessments with speech language exercises at home etc. Now the official diagnosis is applied, but is there any extra funding to help? nope. Has anyone offered support or information? Nope. So what did the label do except make teachers apprehensive about their year ahead with a child already deemed more challenging? Now they have an excuse to not bother anyway. My oldest is three, was slower in language than his peers but no other area of development was slower, in fact quite the opposite. One or two people suggested I get him screened but when I asked what they would do to help, they all said “nothing but it is good to know”. Know what? What is the point is assessing kids and labeling them if nothing useful comes of it but stigma, a label that provides an excuse for people not to try with the child and places them in the too hard basket.

    • I don’t agree (which I know you won’t find surprising), but I will expand on why I don’t agree in response to your points:

      To pre-suppose that the outcome will not help and only hurt the child, is to pre-know the outcome of the diagnosis (putting aide at this point a rather vital point; that the B4 School Check is not a diagnostic instrument anyway). The outcome might actually be something that can be addressed very well, but how do you know that when you don’t already know the outcome?

      I also disagree that it sets teachers up with expectations or excuses for lower achievement from the student. Any teacher who automatically slips into this way of thinking needs further education themselves; the correct and appropriate response is support to help the child achieve everything they can. It is that very support which is why a diagnosis can be so helpful and even essential.

      I also think you’re very much down-playing the role we play as parents: A diagnosis assists us as parents to seek out the best help and information for our own child. We are not at the complete mercy of the existing school and health systems. We can – and many do – take the extra education and needs into our own hands. So even if the public supports aren’t there, we as parents are then better informed to fill in those gaps ourselves.

      In summary, I really don’t go along with any of your points, though I do understand your argument and your frustrations. And I appreciate the chance to respond to your concerns, even if I haven’t convinced you to change your mind about the importance of checks and diagnoses.

      • bianca says:

        I admire your perspective and think your ideals around stigma are wonderful. However, society is yet to catch up and in the mean time people with needs outside of the norm are stigmatised and will continue to do so for many years to come. I am lucky in that I don’t believe my children have any behaviours or delays that would signal cause for concern. I have friends whose children do however, and I work in mental health so I am more than aware of Stigma and the huge challenge ahead of us to try and challenge and change attitudes. I fully support the idea that teachers who see kids as in the ‘too hard basket’ need education and performance management. However, I don’t believe stigma belongs withthe person doing the stigmatising. It’s an unfortunate reality that people do become disadvantaged by others beliefs and in regards to my children, they simply don’t have years to wait while teachers get their act together. Diagnosis might be a great relief to some parents, especially those that are fully aware that their child needs extra assistance and are asking for the help. The problem I have is that children are increasingy pathologised these days and any child who thinks or acts outside ofthe box quickly attracts labels. Bright children are often overlooked as they often exhibit ‘quirks’ that end up with unhelpful lables and attitudes. People seem more focussed on finding problems than strengths in regards to children. The fact that B4 school checks are offered as a package as not in bits that parents can pick and choose from, to me shows that there is further agendas. I find it very difficult to believe that it takes four years for a parent to realise that their child is in need of a specialist service, whether it be for sight, hearing, behaviour or speech. The people that this will appy to are unlikely to engage in this screen as they are to engage in previous screens. If people have found the B4 school check useful in gaining access and funding for service then that is great. In regars to the earthquake scenario – again that would be wonderful if gaps were identified easily and quickly and those gaps filled with useful service. Working within health systems I know how long this would take to get up and running and the kids who need it will be at high school by the time appropriate service is funded, developed and delivered. The optimistic side of me agrees with you. The realistic side of me tells me that the world is not an idealistic place and you need to work with what systems you have.

      • Hi again bianca. Just to reply to a few of your points in this comment:

        “The fact that B4 school checks are offered as a package as not in bits that parents can pick and choose from, to me shows that there is further agendas.”

        The B4 School Check does not require the parent to take part in every aspect of the check, they can choose not to do the SDQ for instance. If what you mean is parents often don’t know this, then yes I share your concerns.

        “I find it very difficult to believe that it takes four years for a parent to realise that their child is in need of a specialist service, whether it be for sight, hearing, behaviour or speech. The people that this will appy to are unlikely to engage in this screen as they are to engage in previous screens.”

        There is some truth to this of course, but I have personally interacted with a number of families who were in denial about thir child’s issues (that were obvious to those around them) and others who were sure their child did have issues when they simply did not. The B4 School Check would help pick up on cases like these, at the very least.

        “The optimistic side of me agrees with you. The realistic side of me tells me that the world is not an idealistic place and you need to work with what systems you have.”

        This isn’t about me being optimistic as opposed to realistic; I agree that there aren’t sufficient services in place to adequately and quickly help many of our kids – at this point in time. However, as I said in my previous comment, this isn’t just about the existing system and government resources, this is very much also about letting the parents know about how their child understands and operates within the world, empowering and informing the parent about how to best deal with their child.

        On some of your other points we are somewhat in agreement. For instance, I also think there is too much pathologizing going on of our kids, though I strongly disgree that it’s because the kids “think outside of the box” or are “quirky.” I am more concerned with when a child is labled with a condition based on a poor understanding of the development of young children (many early-age ADHD diagnoses have been strongly criticised for this), or when clinicians are diagnosing children who don’t meet criteria, because they want the child to get particular supports otherwise not available to them (I’ve written a post touching on this previously https://autismandoughtisms.wordpress.com/2011/07/22/ill-call-a-kid-a-zebra-recognising-fashionable-autism/ ). There are some valid concerns around labeling, but those concerns are about diagnosis practices more generally, not the B4 School Check.

    • nostromo says:

      Can’t quite believe what I’m reading there

  6. bianca says:

    Another point, looking at the questions about ‘potential problem behaviours’. Ask any child in Christchurch right now half of these questions and they would all be labeled as complete nut cases. After two years of earthquakes, many sleep with lights on, have sleep difficulties and life is just different for them. I believe in the years to come, Canterbury children will no doubt be some of the most resilient and strong individuals in this country but the B4 school checks will no doubt reveal a huge amount of problems that need medications and other services. Not that they would be available half the time anyway which is the irony.

    • I think you’re unhelpfully over-stating the point when you say “complete nut cases.” But putting that aside, if those children – temporarily or long-term – need more help because of what living through the earthquakes has done to them, then I see no harm at all in acknowledging that and realising those supports are in high demand. If we don’t first see and acknowledge the demand, how can we expect organisations to step up to address those gaps and challenges? Information about need, is a good place to start.

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