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]

I see that, Star, but to want to avoid a diagnosis for your own child is one thing, to make an accusatory statement condemning mothers across the board is another thing entirely.

In all honesty, following any assessment/diagnostic path brings with it the risk of actually ending up with a diagnosis. ASD assessments are not like school portraits or vision screening - it is not something done for all children at all times. There needs to be cause for concern. There must be consent requested and obtained. No parent walks into a school conference and hears "you didn't know we were assessing your DC, but guess what... they have autism!"

In all reality, autism diagnosis, as well a the diagnosis of other neurodevelopmental disorders and learning disabilities, is a very subjective matter at the best of times. In many cases, it is not a yes/no, but instead a complicated and convoluted experience, coloured by the bias and experiences of the assessor, the professionals, parent(s) and the child themselves. It is not a pure science, and vulnerable to ego and cynicism, but it is the best we have at the moment.

[MareeeyaDoloures]

Beemom, perfectly put.

[anxiousmothernet]

After my flaming this week and being told to butt out by Ouvyre, I still want to make some points.

Ouvyre, my personal experience of autistic behaviours is at the borderline/mainstream end.

Also I've never, ever used the term 'grow out of it'.

Autism is defined by the American Psychiatric Association in the DSM. Psychiatrists from around the world try to group together different symptoms into 'diagnoses'. So as with any psychiatric 'diagnosis' it is just a label for a collection of symptoms. There's no swabs or blood tests or biopsies.

If autism was diagnosed with a brain scan like an MRI or EEG that might be a different matter, but it isn't. Mareeya ? autistic behaviours may perhaps be like the type 2 diabetes, but the public's perception of autism is more like type 1 diabetes (from NAS website: autism is a lifelong developmental disability).

One of my complaints against the Autism label is the assumption that it is a neurological condition. Given the prevalence of motor planning and sensory processing difficulties I believe that autistic behaviours also have physiological roots.

Wilson Frickett you describe your despair before your child's strange behaviours were labelled and how much easier life is now. Good ? I'm glad that the autism label has helped you. However in my child's case it is not an easy fit and has not given any insight into why he finds certain tasks and situations difficult.

Several people on this thread, and on other threads round about, say that they had to label their child to get any help. Some of those threads read, to me, like the authorities are implicitly coercing and blackmailing parents into labelling their child. Of course the authorities will spin some BS about resource allocation, but IMO it's really about maintaining the status quo. They say: we will only help your child if his card is marked to say that he is pathological and defective. Then the school will issue a move 'n' sit cushion and a laminated visual timetable, but there's no danger that the school, or indeed the education system itself, will make any fundamental changes to the environment or curriculum.

I looked up Pathological Demand Avoidance yesterday, having avoided it because of the word Pathological. Some of PDA is a fair description of my child, but there's no explanation of why he might find demands stressful. And I certainly wouldn't want to burden my child with a Pathology. (I will show the blurb to his school though)

Zzzzz ? you say in one post about people who 'can't read facial expressions'. That's just the sort of absolute statement that makes me grrrr. My child didn't learn to read facial expressions as a baby, but as a child he's been taught. Of course he's not as brilliantly fluent as other children his age who have been doing it for years, but he's getting better.

The autism industry is enjoying a boom at the moment. (For eg, there are now a dozen UK universities selling Autism Studies courses). As more and more symptoms get added to the autism roster, so the drag-net gets wider and more and more children caught up in it.

I'm incredibly fortunate that my child's school gives him as much support as other children who do have ASD labels. I've also been very upfront that we want help and not labels. Sometimes that has led to minor exclusions from support and services, but I've always complained about those and usually got the support in the end.

BeeMom ? you are right, I blundered into the assessment and diagnosis trap thinking that would bring enlightenment. It didn't. It was a slow moving conveyor belt leading inevitably to an ill fitting lifelong label.

Hothead ? education, SEN and health are all publicly funded so dealing with children who have developmental is inevitably a political issue A bit like Type 2 diabetes has become a political issue. Are you saying that my views are fanatical because they're different?

Much of my anxiety is centred around my child's real difficulties and our relationship, so perhaps ruminating on the crapness of the system gives me a break from that. I'm sorry if I've upset people, because it's all quite upsetting enough when your baby isn't developing as you'd hoped.

Here's a positive look at fixed and maleable mindset www.ascd.org/publications/educational-leadership/oct07/vol65/num02/The-Perils-and-Promises-of-Praise.aspx

[fanjoforthemammaries7850]

Neurological IS physiological..youare confusing neurological with psychiatric methinks.

[fanjoforthemammaries7850]

My child has massive motor planning issues. They.are neurological.
i.e caused by something as yet unknown in her brain.

[fanjoforthemammaries7850]

Also saying a diagnosis means "giving your child a label that they are pathological and defective" is again very offensive to me.

I don't care about labels as there is no way my DD could pass for or ever become NT with or without one but she is not "pathological or defective".

You just can't seem to help.yourself coming out with this stuff.

[fanjoforthemammaries7850]

You seem to find the word and diagnosis of autism somehow offensive and think that people with it are labelled as lesser humans I think.

[fanjoforthemammaries7850]

Anyway I would just love the luxury of angsting about "labels".

[fanjoforthemammaries7850]

It is just semantics

[fanjoforthemammaries7850]

Sorry..I appreciate I have different issues..just see the red mist when I read about my child's condition as "pathological and defective".

[fanjoforthemammaries7850]

I'm sorry I got ranty there.

I do know how hard the DX or non DX process is..take care of yourself but don't be scared of the autism DX.

[cansu]

I have two dc with ASD and a dp who is also undoubtedly aspergers. It is clearly a genetic condition for us and to describe it as a psychiatric disorder is ridiculous. Fwiw I do understand the unwillingness to diagnose if your child is at the less severe end of the spectrum because you can then do what anxious mother is doing and instead refer to the symptoms such as poor motor planning or poor understanding of non verbal communication etc. however I think the refusal of a diagnosis has more to do with feeling ashamed or depressed at the diagnosis than in getting a better outcome. If the diagnosis does nothing else it enables you to protect your dc to some degree from other people's ignorance. I suppose in some ways blogs like anxiousmothers may also serve to perpetuate the idea that autism is something to be ashamed of.

[AmberLeaf]

Perhaps part of the problem is that their is a blurring of understanding between psychiatric and neurological disorder?

Perhaps the issue with ASD Is that for some it is a mental health issues not a neurological issue and as a result they struggle with the stigma associated with that?

I agree. they are of course wrong though. My child isn't mentally ill [for now anyway]

It is hard, but I think parents need to get over their own preconceptions and do what is best for their child.

[BeeMom]

I am seeing the "issues" that anxious is coming up with have actually very little to do with her child and a lot to do with some deep seated self loathing for something that I can't quite understand or wrap my head around (feelings of parental inadequacy, perhaps?). By your logic, anxious, anyone who does not reject ASD diagnosis out of hand is apparently somehow complicit in the development of the "autism industry" or seeking to medicalise something that can be improved or something other method of identifying a child as "pathological and defective". I am certainly glad that being "railroaded" into diagnosis and the use of techniques that have been shown to support learning and behaviour in children with ASD in the classroom is helping - certainly the "autism industry" had nothing to do with the support methods your child is receiving, correct?

Guess what, my child's body and brain ARE defective, and there is a pathology, but my CHILD is not defective. She is a sweet, loving, gentle, strong warrior who has triumphed over more in her seven years than most people could even imagine, let alone come through and keep a smile on their face.

Classroom adaptations in a MS setting are a pipe dream for us. You are comparing apples to oranges here. On top of that, Bee's ASD features are neurological (she has had 2 strokes and deals with uncontrolled daily generalised seizures from the "undamaged" portion of her brain) AND physiological (Physiological refers to physiology - the way that the anatomy functions or doesn't). Neurology is just a subset of physiology, a smaller part of the whole.

With that said, to attach shame to psychiatric illness just further stigmatises it, and if you do that, you are in for a shedload of trouble in the future. The incidence of mental health issues in individuals with ASD labels diagnoses is staggering. OCD, depression, bipolar disorder, agoraphobia - all of these are exceptionally common in older children/adolescents/adults with "mild" ASD. Fortunately for you, since you can dismiss your child's ASD diagnosis out of hand, I am sure that ignoring these down the road should be just as easy. Let me know how it goes for you.

Yes, PDA is not a beautifully or gracefully named disorder, but neither is Non-Verbal Learning Disability or any one of a number of others. Obsession about the words is pointless, and just redirects energy and attention from what matters, which is how to support our children and ourselves and make life the best that we can in a difficult situation.

Now... on to the topic of flaming. You are apparently unclear, anxious, about what flaming is. What the other members of this board are doing is taking exception to your offensive and broad reaching statements by countering them with respectful and honest examples why you are wrong. If we were calling you a shallow, callous, self centred git (which nobody has, regardless how tempted they might have been), then we would be flaming you. See the difference?

At the end of the day, if, after through assessment and consultation, an individual is deemed to fit the criteria for an ASD, or mitochondrial encephalomyopathy, or Type 2 diabetes, or blindness, it is a diagnosis and NOT a label. Perhaps the definitions of these two words might assist you in understanding the subtle differences between these two words...

[StarlightMcKenzie]

I don't know about being 'railroaded', I led the campaign for my ds' dx and when the professionals seemed reluctant or stalling, booked him in for a private dx.

I'm not sure what part of the autism 'industry' I represent and despite the ASD dx, most on here know that I have been fighting AGAINST the 'SEN Industry' since before dx.

[StarlightMcKenzie]

'Given the prevalence of motor planning and sensory processing difficulties I believe that autistic behaviours also have physiological roots.'

Can you explain what you mean by this? Also than what?

And, for the record, I think TC is an idiot!

[MareeeyaDoloures]

Anxiousmum, it's possible that 'The public's perception of autism is more like type 1 diabetes' and I'm well aware that the NAS defines it as a lifelong condition.

The public's perception of autism is generally so far off the mark, that I prefer to ignore it altogether. That said, their perception of type 1 diabetes is doubtless just as poor.

[MareeeyaDoloures]

In fairness to anxious though, I think there's a strong anti-neurodiversity, unconscious-eugenics-lite strand to the current tendency to assume that difficult or disruptive dc must be 'genetically challenged', and that they should be changed (or just go). Sometimes I'm just a teeny-bit reminded of the Soviet tendency to declare the awkward squad 'mentally ill', to make them easier to ignore, or imprison.

[AmberLeaf]

Great posts BeeMom and zzzzz