I get all that and it is par for the course for an autism parent. What I have a hard time understanding are people who are utterly ignorant of what autism is and yet seem to feel the need to share their ignorance with the world.
Take for example a comment that I saw earlier today on a story about Sharron Angle. Some person calling themselves "behyndblueeyes" took the time to write something so absurd that I can't even begin to describe it, you have to read it for yourself.
I can't seem to find a way to get a direct link to the comment, but the time on the comment is 9/27/2010 2:04:17 PM so if you scroll through the comments, you should be able to find it.
Here is the text of the comment -
It is my understanding that some parents of autistic children are exploiting the system. They coach their children to behave as mentally challenged when they visit a doctor. Many of whose children have no such handicap, however these parents will seek out a doctor that will make a claim of such a handicap. As a result, parents of these so called "autistic children" receive an extra $500 monthly payment given to them by the taxpayer to assist in their child's needs. Of course, that isn't how it works. The parents simply have another $500 a month coming from the taxpayers to squander on their own pleasures.
So yes, there are grounds to question the legitimacy of autism claims.
Anyone with an adolescent child can make these claims, coach them to appear abnormal and silent in the presence of their doctor to steal from the taxpayers. I would suggest that all claims of autism requires an MRI scan to help determine whether a child truly has this condition.I can only marvel at the sheer ignorance of this person and the lack of facts in their comment.
I don't know if you could teach a teenager to "act autistic" or not, but I can't believe for a second that any qualified doctor would be so easily fooled. I am not saying that it could never happen, but the kid would have to be a tremendous actor to pull it off and, even then, there are many involuntary tells that would give them away (hint - watch the kids eyes to see what they look at). Plus that ignores the fact that there are psychological tests like the ADOS that are designed to help diagnosis autism. It isn't just a matter of having your kid not talk and flap their arms in the doctor's office, there would be so much more to it than that.
I don't know of any government program that gives parents $500 a month for having a child with autism. Maybe there are such programs in other states, but I have never heard of one.
And then, to suggest that an MRI be performed to somehow validate the claim of autism. I have to wonder what they think an MRI will show. Apparently they have not taken the time to even look up basic facts about autism. If they had, they would have know that there are no quantitative tests for diagnosing autism - you can't tell from an MRI, blood, or other physical test that someone has autism.
I would like to think that this sort of ignorance is rare, but unfortunately it is not. If you look at some of the other comments on this story, you will be treated to other opinions that are just as bad as this.
I think it is important to remember that addressing this sort of ignorance needs to be one of the main goals of the autism community. It is too easy to look inward and argue amongst ourselves about vaccines, causation, difference vs disability, functioning level, or other such minutia and forget that the rest of the world is rather ignorant about autism.
I also don't know of any state-funded program that gives a payment solely based on a single diagnosis- is it possible the reference is to SSI-DC? with an ASD Dx that is very difficult to qualify for - and payment is also predicated on family income.
ReplyDeleteAlso- many doctors are, indeed, ignorant (untrained, inexperienced) and so their Dx may not be accurate... and many others may be card-carrying members of the "Dx-of-the-month" club.
Also- many parents, professionals, and others, are learning it is easier and much more expeditious to access services, and secure payment for those services, with an ASD Dx - take a look at the rise in dual-diagnoses: kids with Downs, who are generally very socially connected - and also subject to hypotonicity (antithetical to the ASD Dx) are getting a dual because they require speech, and may present "behaviour problems."
Once again, this illustrates the way everything gets warped from the influence of gate-keepers, IMO.
It's a well known tale... that there are many being dx'd with autism to get services b/c other dx's are losing out due to funding battles.
ReplyDeleteIt is the #1 reason, even though my eldest is doing very well and technically has reached the dx of mild NLD, I have not removed his "a mild form of ASD" dx from his paperwork - although the Psychometrist offered to have him re-dx'd. Why?? B/c at age 2.5 it was non-verbal mild PDD, at 3 it was "speech and language delayed with global delays" where in K they informed me it was "just a learning disability and they didn't have to do anything until Gr 3". Took me 18mths to get it changed....
Right or wrong... we would not be "normal" at 11, with a few quirky social skills issues, severe claustrophobia and poor short term recall as our main issues... All able to be dealt with b/c of Ont PPM 140 and OT... without ASD in the dx.
For that comment, most likely it is just a troll - someone who is posting a comment designed to elicit rabid responses from others. Trolls delight in seeing what kind of reaction they can provoke, just like kids.
ReplyDeleteIn my opinion, it is best to just ignore them. Any acknowledgement of their vitriol or ignorance is exactly what they want. Being ignored is the greatest punishment.
For once, I completely agree with you MJ. The "people fake autism in ordert o get services" claim harms autistics and their families, for whom it is hard enough getting the supports that are needed.
ReplyDeleteOne more thing: notwithstanding the APA, "Autism" or ASD is NOT A DIAGNOSIS. It describes sets of symptoms, darn it! Calling it a diagnosis warps access to needed services - if a person needs speech therapy, they need speech therapy.Sure, knowing why the therapy is needed would be helpful, but it doesn't obviate the need.
ReplyDeleteLet me add: I am the parent of several "extra-ordinary" children. For a long time, accessing services based on a Downs Dx was a given, not a battle. That has slowed significantly.Now, accessing services with an ASD Dx has became -well, not a piece of cake, but a lot easier (and slowly it IS becoming a given.) And don't EVEN get me started on paraplegia!
Most of us parents are stuggling to afford services for our children, not recieving a paycheck for it!!! My child also has multiple food issues. I get accused by some of making up reasons to put him on a special diet, like I enjoy pulling my hair out trying to figure out how to feed my child. Are these people also ignorant of carma?
ReplyDeleteHi, I understand you're frustration as parent of a child with autism who is being smeared by this accusation, but you are wrong if you think there are no known cases of parents doing this. I'm sorry I don't have a reference for you as I wasn't prepared for this. All I know is that I absolutely have read about it somewhere fairly recently, probably in context of a well-known case of child abuse. Unfortunately no system would ever be completely foolproof against people who are prepared to go to great lengths to misuse it. Kids really can be pressurised into behaving in certain ways for doctors. I think it is probably quite rare though and exists in a context of general abuse and deprivation when it does happen. Perhaps the person who wrote that comment actually knows someone like that ...
ReplyDeleteI think it is fairly unlikely to say the least that there really are a significant number of people doing this with Autism itself. However there are more widespread problems with a huge number of children (including teens) being diagnosed with all sorts of mental conditions, particularly in america. The use of prescription drugs on developing kids who may not really need it is worrying. There was a recent article on some news site I saw which linked increased diagnoses of things like aspergers to the fact that some school boards had stopped including an asterisk to indicate that students had been given extra time in exams ... The commonest disorder that you find this with is dyslexia. At the moment it is absurdly easy to get a "diagnosis" of dyslexia from people who aren't really qualified to do that, without doing lengthy tests, and people are actively encouraged to accept this label to be given the extra learning support (at university level).
Hopefully the DSM V will go some way towards stopping this - it has been stated that the definitions of some mental disorders in DSM IV were too fuzzy and caused e.g. the rash of kids being diagnosed with bipolar. I will be relieved if it does reduce the number of kids given strong psychotropic drugs.
Anyway, I do think you were right to be frustrated by the original comment. It is the sort of hysterical comment that people use to justify reductions in social security payments to people who really need them etc etc etc. When (or if) parents actually do behave in the exact way they described, it is child abuse in my opinion. You were right to remark on how hard it should be to get kids to play along with that - I just wanted to state that it has been done.
I'm not making this up. I'm really sorry not to be able to give a reference. I wish I could, it will bug me now. But it really just was mentioned as a side issue in some historical cases I was reading about. I know it is depressing to think about but sadly there are a lot of messed up evil people in the world who do horrible things to their kids. Things like this have been used as ways to stop abused kids from having to attend school, as well. It reminds me slightly of the controversy at the moment there is about munchausen's by proxy - a LOT of people are still being accused of having this at the whim of social workers, which is causing a huge backlash along the lines of "MBP doesn't exist". It may have been renamed recently, but sadly it does and people have even been filmed suffocating their own kids etc etc.
Balance is what is needed - it's rare for people to go to such great lengths to convince people that their child is sick when it isn't.
Sorry if this is not all that cogent ...
I work in the social work field and I see a lot of abuse of SSI. Probably 75% of the autism cases out there are questionable. It gives a extra income and certain privileges to the families. One family I know was able to force a landlord to build a high wooden fence around their trailer to keep the children safe. The "autistic" children stay indoors and play video games all day (they are nearly teenagers) and don't go to school. They also forced the landlord into allowing the "boys" to have dogs for comfort. The dogs are two large vicious pit bulls that help protect the parents pot plants along with the fence. The children and parents smoke pot all day long and each one gets SSI check for various reasons (the parents). they stayed stoned and fat in their government paid for trailer.
ReplyDeleteHi Fontanelle,
DeleteI'm sure that you are right and that there are people out there who do abuse the system. But, in my experience, I think that that sort of behavior would be the exception rather than the rule.
I have never met or heard about families doing something like you are taling about but that might be because of social factors. Almost all of the other families that I have met are ones that are trying to help their children get past their autism and few, if any, of them qualify for SSI.
I don't doubt that people do abuse the system but I don't think that it is as common as you think in autism families.