I'm very cheesed-off at the moment. I have a child who is having significant problems with a particular government-funded service due to sensory over-sensitivity and other autistic trait of a purely neurological nature, which are not being accomodated, as the services do not recognize these difficulties, as my child has not been diagnosed with anything because of the problems. Instead these service providers are choosing to treat my child as though this is a behavioural/discipline issue, exacerbated by us parents. :evil:
What are my options? The way I see it I don't have any. Were not going to go looking for any kind of autism diagnosis for our child, for a number of reasons. First, our child isn't socially or intellectually disabled. Our child gets good grades at school, is in a gifted and talented programme, is never in trouble for misbehaviour at school, and has friends (some are a bit weird, but that's OK). Secondly, I'm not going to stigmatize my child with the "autism" label. No one needs to drag that kind of baggage around through their life.
Sensory Integration Dysfunction is a label that sorta kinda fits, but the medicos don't take it seriously and it's almost as stigmatizing as the autism label. I wouldn't know where to find anyone who would diagnose it anyway.
Most of my child's characteristics that are unusual are the kinds of things that neurologists or neuropsychologists study, things such as lefthandedness, odd reflexes, odd muscle tone, synaesthesia, high IQ, sensory over-sensitivity, so a neurologist seems to be the only sensible health or medical specialty to diagnose whatever you wish to call the condition that my child has. I doubt that neurologists do this though. What would the diagnosis be? Why has the profession of neurology ignored autism and it's many neurological manifestations?
Were not going to go looking for any kind of autism diagnosis for our child, for a number of reasons. First, our child isn't socially or intellectually disabled. Our child gets good grades at school, is in a gifted and talented programme, is never in trouble for misbehaviour at school, and has friends (some are a bit weird, but that's OK).
Maybe thats exactly why your child could be autistic.
It is a dilemma for many parents, if the kid doesnt have a label they dont get any help. Thats why labels are a necessary evil currently.
The child in question doesn't have any stims or interests that are obsessive enough to be considered special interests, so I really don't think anyone can say this is an autistic child. Has a pig of a temper, though. :roll:
I don't want any elaborate or expensive form of "help" for my child, I just want know-nothing adults to stop misinterpreting my child's behaviour as disobedience or neurosis, and I'd like them to at least consider some simple measures that they might take to cause less of a sensory onslaught for my child. They haven't even done that.
I've written one of my letters.
Interesting that 33% believe that it shouldn't be diagnosed.
If that did happen though, wouldn't we get more ignorance, remember the days when being left handed was shunned and children had to use their right hand to be 'normal'.
Without a diagnosis, wouldn't autistic kids told to be normal (Ok that does happen know to a certain extent).
I know someone who took an expensive report written by a psychologist to a primary school, in an effort to get an accomodation for their child's special educatinal need, and they got nowhere. I think the school staff might consider that a parent can get a psych report that says whatever they want it to say if they shop around for the right psych and pay enough for the service.
I very much dislike the idea that what my child says about their experiences isn't validated till a qualified psychologist or psyhiatrist writes about it in a report or verifies it themself in person. Adults who are being paid to look after kids and their needs should communicate directly with kids and, unless there is reason not to believe, take what the kid says seriously. I do this with my own kids, and I expect teachers to take what my kids say seriously too. Why is a psych needed?
I've been doing my own behavioural analysis since my child was a baby, and it's obvious that my child has always had a sensory system that's turned up to the max. It isn't rocket science.
Well I have to say I'd rather a neurologist do it than a family dr. for myself honestly. Of course, I walked out of a neurology consult for my oldest son to find out if he's having seizures gaining an unofficial diagnosis of ADHD for myself from the head of neurology at the children's hospital.
I'd think that in may ways a neurologist would be better than someone that deals with others areas... after all autism/aspergers is a neurological-based condition so to speak.
As far as I know, there aren't any credible neurological tests for autism or ADHD, so at present I don't think any neurologist would be considered qualified to diagnose either condition. I wish there was an objective, physical, neurological test that could be done by a neurologist to diagnose autism/AS, or at least diagnose our neurotype. Then the complicted questions about whether a person is disabled, and what constitutes disability, could be circumvented, and personal bias and pet theories of practitioners would not bias the process.
It looks like we have made some progress with getting a sensible response from the bureaucracy to my child's needs. On paper we have official recognition that my child has special needs requiring treatment that is appropriate (but no statement about the nature of those needs). We also have a plan of action that seems to be sensible. I wonder what will happen when my child needs to see people in person to make a claim on these promises?
Barking-dog, if you cared to read my posts you would see that the child of mine that I am discussing in this topic does not have the same issues to deal with that you have, such as bullying, dyscalcula, social naievity, Tourette's, or social isolation, therefore I don't see why your expereinces are in any way an argument for getting my child diagnosed with any existing diagnosis.
I'm not a neglectful or a disinterested parent, unlike some parents, and I'm sure it would be very obvious to me if my child had a stim, or had no friends or had a tic. It would be obvious to me if my child had a learning disability as kids these days in the state where we live are routinely given many IQ-like tests to screen for giftedness and also as a part of federal government academic achievement testing to monitor and compare the performance of individual schools. These federal tests are given at a number of different times at different ages, and the results for individual students are sent to parents. There's no way any significant learning disability could go unnoticed. I don't need to rely on the subjective reports of teachers to identify weaknesses or academic gifts.
I know that in the past parents could try to plead ignorance if they neglected to support gifted or disabled children's special learning needs, but these days there's no excuse whatsoever. As a child myself I had some autism-related problems with school learning, was an academic under-achiever, was bullied, was a bit of a misfit, had a stim etc, so I'd know exactly what to look for. I don't believe for a minute that my parents didn't know that I myself was different and was in many ways struggling. They knew right from the start. The school contacted them about my "loner" tendencies right from year 1, and a new set of issues came up with my entry to high school. If you think there are parents who don't notice that their undiagnosed autistic kids are different, you are naieve. They just don't want to know, or they mistakenly think the issue is something other than autism.
My child has no stims, has no social problems that are beyond the normal range for a child of their age, and has no learning disabilities at all, in fact the child is academically most capable in all academic areas of learning. The problem that my child has is sensory in nature, not emotional nor cognitive. This sensory problem is the same as the sensory hypersensitivity that many, but not all, autistic people have, but that does not by any means make my child autistic in any meaningful sense of the word.
did read your post. i am really just curious because you want your son accomodated so there must be some kind of problem, especially when you said there was some other kind of neurological aspect of his possible aspergers.
Why on Earth have you assumed that I'm writing about a male? There are just as many female as male autistics. Don't believe that crock that the "experts" say about male autistics being much more common than female ones. They couldn't identify a female aspie if she bit them on the $&*#. In our family autism and autistic traits are equally divided between the sexes.
Yes, I have asked for acommodation (for purely sensory/neurological issues). But this sensory/neurological aspect of autism is not covered at all by any DSM diagnostic category, not even PDD-NOS, because the DSM does not include any of the sensory aspects of autism, or any of the purely neurological aspects of autism, such as odd muscle tone, odd reflexes or motor clumsiness, in any of the diagostic criteria. This is most probably because the DSM is written by an association of psychiatrists, who would no doubt like to preserve the idea of autism as a mental disorder that belongs under their care, rather than allow autism to be seen in a more value-neutral light as a neurological variation on the human condition, diagnosable by neurologists. My child has a mild degree of clumsiness, a mild degree of left-right confusion, a weird reflex (as described by Asperger in his original paper), substantial sensory hypersensitivity, a bad temper and highly-strung personality, typical of gifted people and aspies, and also has the distinctive aspie stiff posture, but oddlly enough, none of these autistic traits counts one bit toward any DSM autistic spectrum diagnosis. All of these traits count toward a diagnosis of "Sensory Integration ...", but the sensory integration stuff isn't a recognized diagnosis.
I do know what a stim looks like. I've probsbly read more and know more about high functioning autism than many qualified clinicians.
I would know if my child had any cognitive issues that impair day to day living, as I do live with that child, and everyone in our household is expected to pull their weight, even males! In fact this child is quite organized. I do think there can be a problem when mothers do the sex stereotype thing and look after their sons as though they are incapable of doing chores. This could hide the truth when it is in fact true that the son has some kind of practical disability. Still, I've got to say that I believe most of the supposed male lack of ability at doing household work is just due to lack of practice and lack of motivation.
and just because you take your child to see if this is the diagnosis he needs doesn't really mean anything other than what you want it to mean. you don't don't have to put your child in special ed. or anything.
Yes, but would having a DSM diagnosis mean my child would be ineligible to join the armed forces, or to join the police force? I believe this is true in some countries.
Are you so naive that you don't think having a diagnosis for a "mental disorder" on one's medical records would not erode any credibility that my child should have as an adult patient in the eyes of every doctor who reads that record in the future? I have been warned repeatedly by others to make sure no record of autism or any other mental condition gets into my medical record, because once that happens you have no credibility as a patient. Symptoms of serious disease can be dismissed as nonsense, leaving the patient without medical care. It can happen, because it has happened, many times.
Barking-dog wrote
other people always think i'm angry when i'm not
I get that too. Those neurotypicals are supposed to be so expert at reading emotions, but they often misinterpret aspie excitability or passion or lack of expression as anger or personal threat. If that isn't emotional illiteracy, I don't know what is!
StefanNL wrote
After this initial diagnosis I also had to have a neurologist diagnose me in order to keep my drivers-licence. This was only because of the use of medication (anti-depressants) and the depression.
This seems really strange to me. I have never heard of any person diagnosed with depression being denied a driver's licence because of depression or use of anti-depressant medications. If this happened in Australia or the US a huge proportion of the population would be fighting to keep their licence. I suspect that the PDD-NOS diagnosis could have been the real reason for the nonsense about the driver's licence.
He however did have absolutely no knowledge whatsoever about autism and couldn't even see it and my inability to deal with being eccentric up to that time as a cause for the initial depression. Instead his diagnose was that I was "merely" prone to depression and psychosis and should have a re-evaluation each year.
This neurologist was an idiot, for two reasons. He gave an opinion about psychiatry, which is a medical specialty that he is not qualified to give opinions about. Secondly, "psychosis" has got nothing to do with autism or AS. Schizophrenics and maniacs have psychosis, autistics don't.
I would like it if neurologists could diagnose the autistic brain type or neurotype using the tools and methodologies of their own medical specialty, but I don't think there is the slightest interest in this idea in their profession.
Alison wrote
Lili Marlene wrote:
Has a pig of a temper, though.
Don't all teenagers!
Well, in the baby book that I kept for this child I noted a bad temper at the age of 1 year, and not a lot has changed since then! :shock:
Moonwind wrote
I think the reason that I feel a bit reluctant about psychologists is that there seems to be more emphasis in psychology to understanding and repairing the mind (it's the latter bit particularly that I feel uncomfortable with), whereas neurology seems a more 'this is the way your brain is wired' approach.
Psychology: mind gone wrong - let's figure out why and what we can do.
Neurolgy: brain wired this way, thus incurable.
I agree. It's worth noting that those abominable people who created Applied Behavioural Analysis (a behaviourist anti-autistic "treatment") were from the psychology profession. Behaviourism and it's enthusiasts aren't just a bad memory from the 1960s, such people still exist today. I know one in real life.