Diagnosis = help v not labelling HFA

[Confusingsituation]

I'm having a bit of worry about this
DS has been diagnosed as having HFA but he is young and having been able to track down some experts, I have been told the outlook is good.
They sat on the fence for ages but I think they have finally come off the fence because it means help can be put in place.
The flip side is that he has now been labelled. I didn't mind this but some kindly ? relatives have put this worry into my head.
Anyone further down the road than me, can I ask you was it the right thing to do, to have the issue named? Can it ever be harmful??

[BeeMom]

Mareeeya I'll bite. If it is not genetic/physiologic/neurological, then where do we go, back to the "refrigerator mother" theory? If you have a problem with your car, you don't obsess about the factory it came from... you try to fix it. Ideally, it is repaired with more than just a band-aid solution.

If a child is difficult or disruptive, they DO need to be changed, taught how to behave in the classroom, to function in society, at the risk of reaching adulthood entirely lacking these skills. If you have a NT child, they learn this seemingly by osmosis, with a child who processes input differently, this teaching has to be more overt.

The alternative to "fixing" the problem is to withdraw - HE, isolate and declare it "fine". If that works for someone, who am I to judge?

Yes, in our childhoods, children who were on the mild end of the spectrum or had behavioural challenges were not diagnosed, but instead punished, beaten and shamed into conformity.

Similarly, 25-30 years ago, GORD was almost never diagnosed, let alone treated. Anxiety was something you lived with, depression "happened". High cholesterol and blood pressure didn't have tablets thrown at them as a first resort. PMS was somethng you lived with until you hit menopause, then you lived with hot flashes. Chronic fatigue, fibromyalgia, any one of a number if "invisible" conditions barely existed. There has been a paradigm shift across the entire medical field (perhaps related to the concept that it had the potential to be VERY profitable if mild illnesses and conditions were treated as if they were major or critical illnesses).

We cannot force people to "accept" or "embrace" neurodiversity. Honestly - there are those who won't accept different body types, skin colours or religions - demanding acceptance of something even less tangible is a lofty dream. Not impossible, mind you - but it won't happen just because we say it should. Parents are seeking diagnoses because they feel their children cannot succeed without support. This is not a quest for sameness, but for the coping, safety and psychoeducational skills to ensure that the child has the best possible opportunity to grow and become a contributing member of society - functionally independent and stable in self.

[anxiousmothernet]

Beemom - I am indeed a shallow callous self centred git, so thank you everyone for replying. However my interpretation of the term Autism is in your second link: "a classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive"

Zzzzz - you are being very kind. As is everyone.

Fanjo - I don't believe there is a Thing called Autism. I can see autistic behaviours, which as expressions of anxiety are a cause for concern for me.

I do often feel shame when my child kicks off in public. But when I see his behaviours as anxiety rather than stims my response is more empathic and the outcome usually better. Yes, the autism label (as read from the books) has totally riled me. If don't think about Autism and do think about my little boy as a person then it's easier.

When my child was at nursery and going through assessment, the teachers and various specialists started using code words like Visual Learner and Special Interests. So they labelled him before he was labelled. The nursery also made it quite clear that DS was the one with the problem, not their rubbishy establishment. Requests like, could you get down on the floor and play with him sometimes?, or could you slow down your speech and make requests clearer?, were met with 'we don't have the resources' type response. The other parents in the nursery gave us the cold shoulder. In my experience, being different or delayed is treated as defective and pathological.

Polter - the autism narrative obviously works for you and your child. I guess it must work for quite a lot of people for it to have taken hold. I'm just saything that it all seems Emperor's New Clothes to me.

I don't think that my child is mentally ill. I'm just stating the fact that the autism diagnosis/label is contructed by Psychiatrists. I believe that my child's anxiety is due to missing a number skills. Wish I knew how many.

Re: motorplanning - what if it's physical movement in the real world that develops links in the brain? DS's terrible motor planning causes him to seize up with fear at most activities. Since life is a sequence of activities this is a big problem. It has a social impact: while he can manage simple tag games, more complicated games terrify him. According to the social skill deficit narrative that's because he lacks imagination (actually he has a surfeit of imagination), but if you think about it in terms of movement, he doesn't want to play eg shops because there's too much sequencing involved.

So if he can build his simple sequencing, more advanced sequencing skills will follow. Everytime he sorts a pile of laundry or climbs a new tree, I hope that he is developing new neural pathways. I know that sounds flaky, but it's my hope.

Social skills groups and a lot of ABA by contrast are all focussed on the symptoms, not on building the underlying skills.

Fanjo - your interpretation is that the brain is stopping the development of motorplanning skills. My interpretation is the inverse. Yes we have to work through a shed load of behaviour before he'll agree to tackle a new task, like sorting laundry, but once he can do it the resistance diminishes as the confidence builds.

Did I say that every child with AS/HFA is incorrectly diagnosed? www.newscientist.com/blogs/culturelab/2011/12/why-psychiatrists-should-mind-their-language.html

[StarlightMcKenzie]

ABA is certainly SUPPOSED to build underlying skills. That is the 'analysis' part.

[StuBlack]

Hi Confusingsituation, I can understand your worry. At one level any diagnosis is a 'label', but the only way the healthcare system can handle the complexity it has to is by labeling or categorising conditions.

That aside, 'label's mean different things to different people: they can bring out prejudices in some, which may be what your relatives fear, but as some of the other comments say at least having your DS's condition categorised means that the support options available for that condition are now available to him. The downside is this might also limit the options in some people's minds - the diagnosis of these sorts of conditions is much less scientific than one might expect.

So I would recommend you accept the 'label' as what it is but don't allow it to limit your options. Good luck.

[StarlightMcKenzie]

FWIW I have very little time for most psychiatrists. Are you one? Your references to 'stories' suggests you subscribe to a lot of their theories?

Tony Charman is one and I have very little time for him and his empire.

[MareeeyaDoloures]

BeeMom, glad someone bit .

Anxious mother, have you read this guy's book about medicine? He did one about schooling as well.

Everything you have said about psychiatry and neurology is equally true of other disciplines. ASD is a reasonable diagnostic construct, as these things go, but the cracks are showing, just as they are in so-called 'breast cancer' or 'stroke'. You won't find anyone on this board who thinks that so-called 'autism' is one unified condition (nor even 20!)

[BeeMom]

That is your child and your experience, and not one of us has said that your experience is invalid or wrong. What we are saying is that your experience is not everyone's experience, and to thrust your views in the faces of those who are fighting their own battles and declare their experiences invalid and unworthy is what has caused this ire.

You feel that your son does not deserve the "label" of autism, then reject it, and its associated supports . Go it alone. The nursery didn't have sufficient resources to do all you wanted them to do with your ds - so pull him out and give him all the 1:1 you feel he requires. You can't have it both ways, though. You certainly don't want to be contributing to the burgeoning autism industry, do you? The quote you fired at me was from the definition of "label"... thus proving my point. If you feel it is inaccurate or limiting, then reject it, refuse it and fly solo. However, in the same breath, refuse the "stims" and the "anxiety" label too. You said labels are restrictive, after all.

WRT the opinion blog you have repeatedly posted - I can write a book and publish it (in fact, I have) and have someone review it. This makes it neither legitimate nor factual. That makes it opinion - based on bias, ego and experience.

Since the Great War, there has been an ever evolving term for the condition where soldiers have reached the mental/emotional point at which they can no longer cope. It was shell shock, then by WWII it was known as battle fatigue. In Korea, it was operational exhaustion, and is now known as post-traumatic stress disorder. Same condition, different names. Akin to the blog you posted - time passes, terms change.

You give FAR too much power to words - the recreation and rearranging of 26 letters, with occasional capitals and punctuation (if you are lucky). A label is derogatory if you allow it to be - it holds only to power you attribute to it.

Do you honestly want to hand over that much power?

[MareeeyaDoloures]

I do think ASD is genetic / neurological etc. But a 'difference' only becomes a 'disability' when it stops you doing something. Which is partly intrinsic but also heavily influenced by circumstance. That's partly why I worry a bit about the trend to divide society into 'normals' and 'disableds', I think being seen as 'other' has historically been rather risky.

[StarlightMcKenzie]

Not a brilliant analogy I know but I sometimes think that ASD as a 'label' is a bit like being British. An outsider can start by making an assumption that you speak English, live in a brick building of some kind, are part of a 2.4 kid family, go to school, have 3 meals a day, shop at supermarkets etc, keep clothes in wardrobes, push babies around in prams. With that knowledge they can adapt the way they communicate to take in account of your likely language, vocabulary and experiences and accommodate for the fact that since it is 1:30pm you probably haven't eaten since 8am and are hungry.

None of the above can be true and you can still be British. However, refusing to disclose where you are from to avoid assumptions is odd imo, unless you feel the society you are amongst presents a danger for you from doing so.

[MareeeyaDoloures]

Risky as this particular 'other' is often (not always, but applies to ds and some of his peers) characterised by being highly observent, demand avoidant, oppositional, not listening and responding as expected, resistant to bribes, blackmail and peer pressure, very logical, strong sense of justice, persistent, high energy, unpredictable to strangers... Teachers frequently fear and hate this. Parents struggle with it. Why wouldn't other powerful types hate it too?

[MareeeyaDoloures]

Anxiousmother, have you looked at developmental co-ordination disorder (or whatever they call dyspraxia these days)

[StarlightMcKenzie]

I'm a SNMNer and I'm bloody grateful that I'm in a group, even though many within it differ in their outlook and difficulties. We share commonality. It's a relief and keeps me strong during the tough times.

[BeeMom]

That is a very valid point, Mareeya.

At the same time, there are also those (always have been, but current trends seem to have made this a lot easier to accomplish) who will use "disability" as a tool to accomplish or refuse certain tasks, challenges and agendas. In limited cases, this is being indirectly taught to children through the behaviour of parents who do not hold them accountable for their behaviour as it is being attributed to their "disability" and therefore dismissed.

In reality - my DS is an odd duck, and while I have been outright asked if he has ASD (by strangers, no less) it is NEVER something I volunteer, and at 14, I explain to him that it is prudent that he limits what he tells others as well.

Bee, on the other hand, is very visibly disabled, and no denial of labels or refusal to acknowledge her challenges is going to alter that. I still demand of her the same degree of effort and behaviour as I would if she were unaffected. She plays baseball (in an adapted league) she competes in Special Olympics - both things that would not be available to her without "labels".

Realistically, difference or disability is less important than the attitude of the individual and their "inner circle" and how much they allow the "difference" TO "disable".

[MareeeyaDoloures]

I'm firmly in the pro-diagnosis camp, personally. In most contexts (not all ) as a family, we're 'out and proud' about ds1's diagnoses. Am just aware that many people do live in fear of being openly 'not-normal', and if (for example) someone is already feeling on the margins, they might be more-than-usually aware of the dangers posed by 'labels'.

[MareeeyaDoloures]

I would guess the margins of disability are probably as complex as the margins of sexual orientation. And that context would matter. My guess is that a bisexual man with a wife would be a little more relaxed about that if he was a small-business owner in a San Francisco liberal community than if working for a Republican Right politician in Texas.

[MareeeyaDoloures]

We wouldn't be 'out' if the diagnosis felt 'wrong' though.

[BeeMom]

The reason I don't volunteer DS's dx is that he is old enough that he should have the choice to do that (or not) on his own...

As for not sharing if it felt wrong, I agree wholeheartedly.

[coff33pot]

oh jeez.......

Realistically, difference or disability is less important than the attitude of the individual and their "inner circle" and how much they allow the "difference" TO "disable". I think this sentence is great and totally agree with it. :)

Term "label" winds me up. My child does not go around with DS with ASD written on his clothing tags. Its just a dx and simple just like arthritis, MS, even influenza thats it. No biggie unless you make it one. You do not even have to necessarily disclose it unless you feel it would gain support and understanding at certain times.

DS has Aspergers and the odd co morbids btw. Prognosis "moderate, life long". Now.....I could have took a gamble and not got a dx and had him spending most of his childhood years misunderstood and treated as "naughty" excluded for behaviour brought on by being misunderstood, and hoped he "grew out of it" that the support I provide over the years would help and things would be different.

It may have been, who knows, but unless support is an all round team effort ie the school, clubs, family and you are batting from the same side, there poses a huge risk of total confusion possibly resulting in a delay of learning strategies that might be taught a whole lot faster otherwise.

No one can predict the future or what it holds. No one can state for sure how severe or less severe our children may be.

More importantly NO ONE CHILD is the same as the next the only one who knows that child well is the parent but even the parents dont have a magic wand to say all will be ok.