dx rant | Autism PDD
[QUOTE=fred]
All I can say is, there is a strong genetic component in autistic spectrum disorders. These kids aren't born in a vaccuum, lol (except for Kristy's :).
[/QUOTE]
LOL Fred! I think it's ironic though that even though I can't find a trace of ASD, or even traits, in my or dh's entire biological family, I grew up with an adopted brother who was an Aspie. Plus both my adoptive mother sufferes from severe anxiety / depression and my adoptive dad is OCD. What are the odds of that I wonder?
I agree that the the spectrum is very broad, and without a more detailed personalized explanation to describe a child's actual level of functioning, it's easy to panic at the "A-word."
However, it's come a long way and is still evolving. In the DSM-II, autism was covered under "childhood schitzophrenia" if you can imagine that. DSM-III & IV broadened the spectrum significantly, and the DSM-V revision is in process. It will be interesting to see if there are any material changes.
Edited to add: I still firmly belive that the root of autism will eventually be proven to be genetic, even though I'm not seeing evidence in my own family. Just because I can't see it now, it may be there somewhere further back.
I think the main difference is, is that with myself I needed understanding and some concessions made, but I could get by if I had those. Someone like Tom, or my friend's 10 year old autistic girl, needs constant supervision to help with things like nappies or going to the toilet, understanding when changes need to be made, understanding when someone is explaining something to them (Tom still can't understand a question like "how old are you?"), help with sensory difficulties and ensuring that alternative means of communication are given to them and they are taught how to use that communication if they struggle.
I am not against children who are, for example, in mainstream schools being given help. I believe that it is important they do have help. But I know with myself that it is possible to stim, mildly self injure, have difficulties with communication, have sensory difficulties, come across as shy, immature, awkward, clumsy, to have difficulties with self help and yet still to get by if others are supportive and understanding.
I think as the medical community learns more about autism and itscauses, more accurate prognosis and appropriate interventions will be
possible. I may be wrong but believe that with more knowledge the
broad category of autism will be broken up in smaller more defined
categories based on symptoms and cause. ( I also have the same opinion
about multiple sclerosis.) Right now, we are still in the infant stages in
the scientific understanding of autism.
With what little we know know about autism right now, when a parent
receives that diagnosis for their child they panic and assume the child will
not be able to function on their own in society. I know I did. Not much is
published about children diagnosed with autism, especially since the
DSM IV, and their long term "prognosis".
I know when I was in my panic mode with a diagnoses of moderate
autism, Tzoya gave me lots of good advice about early intervention. With
time I realized, that yes there are severe cases of autism, but I also met
adult people on the spectrum that were similar to my son at his age but
were now self supporting adults. This has really eased my mind along
with watching my son develop.
My state offers little in the way of services to autistic kids and preschool
consists of 10 hours a week with a little speech and OT thrown in to those
hours. Because I can afford to currently, we also do private speech, OT,
and VB plus I spend a lot of time doing floor time with him. I wish the
science was there to tell me if this was necessary in his case but
unfortunately it is not, and I figure these therapies can only help him and
not harm him.
I do agree with Fred that currently a diagnosis of autism gives us not clue
as to the child's functional level and contributes to the "climate of
hysterics and despair that is quite out of line with reality in many cases"
and only serves to make parents more anxious and many so called autism
professionals wealthier.
Perhaps I am just sticking my head in the sand and don't want to face
reality, but I think in the long run my son will be OK. He many be quirky,
but I believe he will be able to function in our society. I think so many of
the kids today would not have been diagnosed autistic when I was a child
and yes some may have gotten other incorrect diagnoses but many were
just a little quirky or eccentric or just normal to everyone else.
So many posts on this subject and dont have a clue on how to jump in or probably missed the whole point (wee brain) but I understand where you are coming from especially having a child very similiar to yours...I dont know what alternative they could come up with..the label of autism made me do things in a hysteric type of way I never would have otherwise..she was so affected and truely fit the label at the time.
Now it is a different story..most of my fears are gone now and I truely wished someone would of told me early on that she would overcome most if not all her symptoms instead I worried to death and spent every waking hour trying to help her. Tons of money spent and a urgency that if I didnt do all of these heroic measures to save her she would disappear in her own world forever...I truely watched for this.
The label cause many nights of lost sleep and more tears than I ever thought I could shed..and now she is doing great..the label only confuses people who dont know the whole spectrum.
Her gymnastics teachers have had her now 3x and I told them today how to be extra focused on her because she was HFA and they looked at me like I had a 3rd eye..never saw it and told me that Sarah was so very focused and compliant...I felt guilty for labelling her and now feel she will be looked at differently..but if I didnt say anything and she zoned out then they would look at her differently anyway..that and the fact she doesnt interact with the other kids at all!
So what do you say to people to help them understand your child without jumping to other conclusions??
I guess I would be upset that I have to have a label of autism in order to get services for my ds if he truly isn't on the spectrum. Maybe he has a different disorder but it seems to me that, even though he is not severe - some of his symptoms really mimic (but are less severe) than those who are more severe.
I don't know - this has given me a lot of pause for thought. All I know is that I will continue to fight to get him services as long as he needs them. Currently, he doesn't need much but we shall see how it goes through kindergarten. He may need more services as the grades progress and maybe he'll need less. I will not take the label off his record because he definitely still needs help! Just not as much as others...
fred, I'm being a little tongue in cheek here - but wasn't it just a few weeks ago that you were really worried that your girls weren't getting ENOUGH help and would they be able to survive kindergarten? What caused the 180?
oh....fred is just being fred.....
karrie
LOL! He's a thinker..I like that:) Makes the board really interesting:PAll I can say is, there is a strong genetic component in autistic spectrum disorders. These kids aren't born in a vaccuum, lol (except for Kristy's :).
That said, it's not a 180. I still think my girls will have problems in kindergarten and beyond. But not the same problems that a kid who is severely autistic will have. There's a big difference between a kid who may slide between special education and regular inclusion, who might need some resource time or some pullout therapies - that sort of thing - and a kid who will need constant 1:1 supervision all throughout their lives.
About the label-- it is against the law for anyone to know your child's label outside of school personnel who MUST know it. Anyone revealing your child's identity and label, even casually, can be fired and possible prosecuted (tho I've never heard of that happening). Whatever educational label your child carries is a way for your child to access NECESSARY interventions. If no special education is necessary, no label is necessary.
From the medical side, HIPPA prevents medical personnel from revealing your child's diagnosis to ANYONE who does not have permission from you to see it. FERPA is the educational privacy law which prohibits the same vis a vis school records.
Not upset, just that the disorder affects such a wide range of kids that it has lost all practical meaning. The vagueness of the diagnosis leads to all sorts of problems that have been mentioned in various places on this thread.
radsdk - I just looked up that book on Amazon. It sounds a bit like what I'm ranting about, here. I may have to check it out - thanks!
IN terms of just looking at the difficulties (as I'm sure you'll have gathered I do believe there are good things about being on the spectrum
Some people are climbing Ben Nevis. Some are climbing Mount Everest. Therei s obviously a significant difference between Ben Nevis and Mount Everest, but that does not mean that Ben Nevis can be happily hopped over. There will be challenges, there will need to be help given, but the help needed will not be as much as someone climbing Mount Everest.
Obviously as well I realise that some people may be climbing Ben Nevis in some parts of their lives and Mount Everest in other aspects.
I think there are two kinds of services being discussed here. At least I THINK there are. School services and state services. School services are governed by Federal law and those laws apply state to state. Those are the laws that cover IEPs. Each state can give MORE than IDEA 2004 (some do, some dont') but NONE can give less. For example, if a child needs 2x/wk OT, the school district must IMMEDIATELY give 2x/wk OT. If not, the parents CAN take the District to a Hearing. State services are different because each state handles non-school services differently. In some states, those services are 100% NOT AVAILABLE to famlies who are much above the poverty level. In some states, those services are not income-sensitive.
Autism is a spectrum disorder and, as such, will always have various manifestations, some worse than others. An analogy is visual impairments. Some people have no eyes at all. Obviously, they are 100% blind. Others had 20/20 vision (or better) until presbyopia got them in middle age (the need for reading glasses). Both of these types of people are considered "visually impaired" but the ability of each to negotiate the visible world is WAY different.
This is becoming WAY too personal.Yeah, sorry I brought it up. It was philosohpical thoughts about the dx in general, not so much to stir up a tiff between parents, though I can see how people would get defensive about what I wrote.
I'd delete it if I could, but since I can't, probably should just let this drop off the front page.
I DO understand what you were getting at Fred...that the same dx should not be given to the kids who can't talk, aren't potty trained, can't stand being around people etc compared to kids that can talk, are potty trained but just have some smaller social issues. Interesting post. Nice to see you, Fred.I'm going to address the labeling/diagnosis only.
I agree, "they" need a new system. It is ridiculous for my son to share a label with severely affected children. There is no comparison. My son doesn't stim, he doesn't appear Autistic in public (anymore - but the only reason he used to appear Autistic was due to tantrums - and he was 3 - so still passable for "typical"). He is quite smart. He has functional language. He met all of his physical milestones early - and all of the academic ones, too.
So, he had pragmatic language delays (catching up every day!). He had tantrums. He had some sensory issues (a lot of which have resolved/outgrown).
He still appears a bit ADD/ADHD.
So, what is the triad again?
Social - His teacher said he played well with a variety of boys at school. He probably isn't in the exact same place as most 4.5 year old boys - but when we go to the park or the gym playroom, he is always with all the other 3-6 year old boys - watching/playing video games, or running around the playground with them. It appears pretty typical to me...
My point is not to make anyone feel bad - but when I see my son running around at the spray park and trying to play with other boys - at the same time I see a child that is like 8 standing by himself, with his hands holding his ears closed, clearly in his own world - I think it is ridiculous that they share a label. Or even a spectrum. It is like two completely different things.
I'm not commenting on the services/making parents go crazy part - because, In my (admittedly limited) experience- the schools give out services based on need. In none of my IEPs (for my son or my daughters) did I ever feel my child was taking away services from another child - or that my child wasn't getting what they needed due to lack of funding. Maybe I'm lucky? We chose our community based on a fabulous school district.
Fred. I THINK I agree with your post although I may have misunderstood its meaning.
When I first figured out that my son was autistic, I was devestated. When EI came in to do his assessment, I felt like I was attending a funeral. When they immediately recognized his issues I thought....this has got to be a severe case as these professional people recognized it within seconds. When reveiwing studies, research and webpages of some rather famous autism groups, I felt like I was grieving for a child who would never have life skills and really had no hope for any type of happy life. But then I found this web page, and I became active in a small support group in my local area and I also began doing some "therapies" at home, before EI was able to come. And then....I truly saw the "spectrum". From extreme to...not so much. Somewhere at the middle range of not so much falls my son.
Let's face it. You can't have a touch of cancer....or a trace of bipolar....or a small amount of being pregnant. You either have it or you don't. You either are or you aren't. But with autism....or ppd-nos....of HFA....or whatever one would like to call it, you can have a little....a lot...or something in between. And since that is the case, you would think the treatment and therapies would be different. But they aren't. They are based on what state you live in...or how much you make (But sometimes that doesn't matter)...or what district you live in....or how the EI team was feeling the day they visited....or what mood your child may be in the day of a Doc's appointment or assessment.
If anything, I feel that the medical and science community has failed in this area. They spend huge amounts of time and money telling us what did or did not cause autism...on yawning research..on testing Baby Einstein videos....on telling us we were stressed when the kids were infants and didn't bond.....but spend very little time in seeing what truly works for children who present so very differently from each other. Docs just graduating from med school barely skim the surface of autism.
I give kuddos to the educational system. They have taken the bulk of this on their shoulders, with very little assitance from other professions.
And that is what I got from your post Fred. I don't grieve for my son anymore. I think he will be OK. Others on this board have bigger challenges than I and will struggle. I truly think these huge differences in outlooks and outcomes are what cause diagreements such as was evident in the 5 autsitic children thread. We will all have completely different outcomes, but the same DX and generally the same sevices. There are times when I am embarrased to bring issues to this group as they seem SO minute in comparison to others problems....you know?
But we are all on the same boat...aren't we? Sure must be a big boat with a lot of levels.
Sorry for the ramble and any typos. As always....thank you folks on this board. Without you...I would still be in mourning.
hmmm, my daughter gets school services ot, speech, para, behavioral. She will be getting extra services through tricare. I'm waiting for her Sept apt before filing those out. I can use her IEP but to save time I'll wait.
If I remember right my aunt did everything she could to keep the family/ school finding about my cousin having aspergers. She turned out ok . She is finishing her degree in PARIS, FRANCE.
I on the other hand want my kids to get the right help bec. they really need it.
This is a very interesting discussion to me. I can see where fred is coming from, but I can also see snoppy's point as well.
Bottom line is, parents get pitted against each other (so to speak) because of a lack of funds to go around, not because of the diagnostic label they receive, imo.
Then again, I still really don't know where exactly Jason falls on the continuum, to be honest. In some things, he's really quite severe, but has improved with help. In others, he's quite strong (especially with coordination issues), but only if you know what the stereotypical autistic person is like, and only if you know him well enough to see what it is that he's actually doing, vice what it appears that he is doing, if you know what I mean. This is a question I'll ask of his psychiatrist next week, to see if I can get it clarified. It isn't really all that important right now, as he's getting the services he needs, but I am intensely curious about it. Judging by this forum, I would place Jase at the moderate/severe end of the spectrum, though. I don't know but one person locally who has an autistic child, and he's got challenges my son doesn't, and is six months younger. *shrug*
OK, I've wandered off topic here. I've often thought about these two things, and I guess I got sidetracked. Sorry!As a parent of a child that is considered moderate to severe...I don't like that parents with mildly affected children get the SAME therapies as my child and sometimes take them instead due to order or funding. We have paid out of pocket for some that were needed. I am on an 8 YEAR waitlist for ANY type of state/federal help. We make too much $$$ to qualify for medicaid/medicare/SSI for respite, etc. I'm not saying that they shouldn't get the therapies the kid needs but why should my child not get them when he needs it and their kid is only doing it because they were first in line, but doesn't really need it?
I have 2 kids on the spectrum. One is much higher functioning than the other. While they both participated in the same EC program, the services they received starting in Kindergarten have been vastly different. My oldest son does not receive nearly as many services through school as my yougest son receives.
As far as state services are concerned, we never applied for them with our oldest son. However, after going through the appication process with my youngest son, I don't see how my oldest son would have qualified. His needs simply aren't great enough to qualify for intensive home ABA therapy.
Thanks so much for clarifying that for us WiMom...I wasn't sure how it went...I started worrying that I could be potentially be taking services away from someone who needed them more.
I'm a little less stressed knowing that they seem to base services on needs, once the label has been given.
I agree and I do not agree. I have no idea how to handle my son because one minute he is one way and the other minute completly opposite. My son has PDD_NOS however, he has no idea what I am saying to him half the time. The system needs to improve. Bottom line. Everyone deserves to have services that will allow there child to succeed. I majored in BIO Chem not OT, Speech, ect... I have a hard time teaching my 7 year old how to read for the plan fact that I know it so well that it is hard for me to teach it. The school systems will not help unless your child is "ruining there stats severly". If your child has minor issues that can affect them down the road but not affect the school they will let them slide because they are not to detrimental to there stats that would affect there funding.
The goverment needs to stop giving other countries billions of dollars and start helping our children. Not just those with Autism but all children with needs!
Payne's mom - I do not think that is the case in most instances. I think that they do not get the same services/therapies and certainly not as much. My son for a while got OT and PT once a week, but our insurance paid for it and we paid a co-pay. It was private. The school gave him 20 minutes a week of indirect OT - that's it. No PT as he wasn't severe enough (although he has the catching ability of a 3 year old and he is 6 for example). He got group speech (not individual) once a week for 20 minutes during which time he was most often the role model for the other kids - which is GOOD for kids who are more severe to have a child role modeling what they are supposed to learn. And, my son got social skills in return.
That is just our experience, but from other stories I have heard - it is based on an individual's needs. That is why they call them IEPs - INDIVIDUALIZED Educational Plan.
I am sorry you have such a long wait - I believe that is for state funding and not for federal funding. Because each state has their own criteria. In addition - you don't know if the kids that got aid ahead of yours don't really need the funding. We are all just assuming that there are lots of parents out there taking everything they can in order to get what they can from the government. Are there people like that? Of course - but that is the case regardless. Do we need more funding - ABSOLUTELY! But let's not blame the people who have less severely disabled children for taking funds away. The funds should be given to everyone who needs them and we should start looking at pork spending (from BOTH parties) and get rid of that. I bet we'd find a heck of lot of funding then!
Well, I am just reading Fred's initial post for now, but I do agree to a large extent. I know with myself that I go beyond just quirky, I have definite motor planning, co-ordination, sensory and communication difficulties that impact greatly on my life, as well as organisational and general personal self care issues. It has never been my intention, before I was diagnosed or now, to ask for services for myself. I shall reiterate that this is purely a personal choice and I could, for example, push for Disability Living Allowance and honestly show I have difficulties, but I would not feel right to do so. I have found my own ways of doing things, sometimes they are longwinded, sometimes they are different, but I get there and I have my husband to support me as well as being able to get advice from other mums on a parenting forum I go on (besides this one). I got my diagnosis so I would know for sure myself for a start, I wanted to know if it was just me, or if it was something else, but there's no doubt. It allows me to explain if I go for a job that I (personally) cannot drive. It enables me to explain to people that I'm not being rude if I seem to ignore them. I do need understanding and some concessions made, but if there are finite resources then I would far rather they went to people who need them desperately.
With our son, we put off claiming DLA for ages, even though his difficulties are severe enough for us to be advised not to attempt mainstream school with him at this stage. In the end we put in a claim and got middle rate care. Basically, UK DLA has two components, care and mobility., ranging from lower, middle and high care to lower and higher mobility. The care component can be claimed from three months. The mobility is claimed at a higher rate from the age of 3 and lower rate at the age of 5. Lower rate care means just a bit of help a day. Mid rate care means a lot of help a day and high rate care means help during the day and at night. As Tom is asleep by 11pm most nights we are not entitled to claim the higher rate care and therefore we also cannot claim for the mobility. This is fine, he is small enough to go into the double buggy we have for the lads still. We use his DLA to get the Makaton resources for him, to buy his nappies and basically to help with anything that might help him. We are also entitled to put in a claim for something called Carers Allowance, but I do not want to do that.
I should reiterate these are just my beliefs and that I will not condemn other people for claiming what they are entitled to.
Please correct me if I am wrong:
A) I am getting the impression that the parents of slightly affected (mild) kids are upset that their kids have to have the label "Autism SD" to get services.
B) The prognosis "autism" as we all understood it when we did not have to deal with it is not the reality of what "autism is now for our kids and we are very upset that we had to live with this dreadful nightmare only to find out after a while it seems our kids are not that bad.
So I say contest the label and drop it off your child's record.
Word of caution though! I know a parent who did not get their child evaluated because of the horrors attached to the label, well as the child advanced in school(Mainstream, no IEP) he fell more and more behind.
We all should measure our kids against themselves to make sure they are progressing. There will always be one thing or another they need to compensate for, so does the rest of the world in varying degrees. So let's party and donate to some charity that helps autistic kids.
Concernedpa.
[QUOTE=fred]I was reading a blog post or something the other day, and the author wrote about a pediatrician that, when asked to give a prognosis for newly dx’s kids, would say something like, “Well, he could either end up requiring lifetime one-on-one care or he could end up the president of a billion dollar software company or anything in between”.
It occurred to me that this seems to be true and as such, the diagnosis of autism is functionally meaningless.
This is not helpful for parents who have severely affected children and it is not helpful for parents of mildly affected children. In fact, it puts these parents at odds with each other, both contending for the same limited resources and putting the special education system under incredible strain - the parents of the severe kids getting screwed in the end, as their access to resources that they truly need are consumed by kids who could make due with less.
It also creates a climate of hysterics and despair that is quite out of line with reality in many cases. This creates a climate within which a whole industry of autism “treatments” that is allowed to defraud parents, with the parents of the mildly affected kids lending credibility to the whole racket when their kids “recover”.
I hope that those who authors of the psychiatric manuals are paying attention to the drama that is playing out worldwide as parents try to figure out their reality when the guidance provided from their diagnostic manual is of limited use and, in many cases, worse than useless. A "spectrum" disorder, where the spectrum ranges from 'quirkiness' to something akin to severe mental retardation is not something that is going to work in the real world. In my opinion, we need more discrete diagnosis, or just go back to the old system of only diagnosis severe cases.
I hope this doesn't offend anyone.
[/QUOTE]Indeed, I was mainstreamed in 5-6th grade (it was gradual introduction followed by perminate placement)
It seemed like the spec ed teacher who I had for grades 3-6 (even after mainstream i could continue to get help from him, tho by 6th grade i could do the work independently) was overwellmed. It was a big class, their were kids their with obvious problems, and I felt at times, at least in 4th grade that I could have made it in a mainstream class (i did not know this at the time tho, otherwise I woulda fought for myself, heh.)
I spent a whole week in a mainstream class, the teacher was watching how i was, and during this time I would not go to my normal spec ed teacher for anything, it was an experiment. I did ok!!! Perhapse i coulda started a year earler in normal class, but it did not happen. My main problem at this time was bahavior, i could cause a scene in class (i had a difficult time seeing how my behavior was being interpreted by others, almost self centered i suppose) and obstruct other students learning.
The teacher said, I had a few issues (i talked alot apparently, kept interupting, again did not see the social issue doing so, but I could do the work fine, actaully I was reasonably intelligent and was ahead in math/science. They wanted to be sure I was ready plus take into consideration the other kids and their needs. I feel with a little behavior modification (NT kids have trouble bahvaing too) I could have done it earler. In 4th grade it seemed my teacher (who I still talk to to this day) did not have to worry about me so much, I was intelligent, and he had his hands full with other struggling students, so I was often ignored, or at least allowed to be more free, it was nice treatment, but i got into trouble this way, heh.[QUOTE=fred][QUOTE=karjab30]
I don't get it...what was too personal...did I miss something?
Karrie
[/QUOTE]
No, just the kernel of something. To that, I don't think that midly affected kids should get no services, just that they should be called something other than "autistic".
I much more meaningful diagnosis for my girls would be something like -
*hard to get their attention, often don't listen or attend well, very self directed - that's, what, ADD traits?
*semantic/pragmatic language issues - mild/moderate.
*non-impairing sensory issues (some sound sensitivity - will cover their ears during fireworks but aren't bothered by ambient sounds in common environments such as restaurants, schools, etc.).
*non-impairing gross coordination issues - not athletic or well coordinated - but can navigate the world just fine, if not as quickly or gracefully as some children.
That'd much more accurately described them, but I doubt they'd be considered 'disabled' given that set of issues.
So what do we have here? ADD and a mild language disorder? A couple of 'quirks' that don't really affect them? I know the tendency is to reduce the labels, but I don't think it makes sense to do it to the degree that we're doing it with autism. Why clutter up the DSM with all these discrete conditions, then - just have two groups: 'normal' and 'not normal spectrum disorder'.
[/QUOTE]
I agree with this. That's why I enjoyed the book "Quirky Kids." I totally see your point, Fred. And I agree with your viewpoint.
Payne's mom - I wasn't trying to get personal and I'm sorry if anything I said offended you. I was addressing it to you since you made the comment. I am very sorry if what I said was at all offensive, but I'm not sure what it was that seemed too personal? Maybe MY lack of awareness is kicking in (my mil is coming on Saturday so I'm operating on little sleep due to trying to get ready!
Tzoya - thanks for chiming in on this. I always appreciate your input. I have gotten confused as to what this post is about as well! I'm probably stopping on this thread and letting it drop off the front page as fred suggested...
[QUOTE=karjab30]I don't get it...what was too personal...did I miss something?
Karrie
[/QUOTE]
No, just the kernel of something. To that, I don't think that midly affected kids should get no services, just that they should be called something other than "autistic".
I much more meaningful diagnosis for my girls would be something like -
*hard to get their attention, often don't listen or attend well, very self directed - that's, what, ADD traits?
*semantic/pragmatic language issues - mild/moderate.
*non-impairing sensory issues (some sound sensitivity - will cover their ears during fireworks but aren't bothered by ambient sounds in common environments such as restaurants, schools, etc.).
*non-impairing gross coordination issues - not athletic or well coordinated - but can navigate the world just fine, if not as quickly or gracefully as some children.
That'd much more accurately described them, but I doubt they'd be considered 'disabled' given that set of issues.
So what do we have here? ADD and a mild language disorder? A couple of 'quirks' that don't really affect them? I know the tendency is to reduce the labels, but I don't think it makes sense to do it to the degree that we're doing it with autism. Why clutter up the DSM with all these discrete conditions, then - just have two groups: 'normal' and 'not normal spectrum disorder'.
[QUOTE=tzoya]
Autism is a spectrum disorder and, as such, will always have various manifestations, some worse than others. An analogy is visual impairments. Some people have no eyes at all. Obviously, they are 100% blind. Others had 20/20 vision (or better) until presbyopia got them in middle age (the need for reading glasses). Both of these types of people are considered "visually impaired" but the ability of each to negotiate the visible world is WAY different. [/QUOTE]
EXCELLENT analogy.
I don't get it...what was too personal...did I miss something?
Karrie
[QUOTE=foxl][QUOTE=tzoya]
Autism is a spectrum disorder and, as such, will always have various manifestations, some worse than others. An analogy is visual impairments. Some people have no eyes at all. Obviously, they are 100% blind. Others had 20/20 vision (or better) until presbyopia got them in middle age (the need for reading glasses). Both of these types of people are considered "visually impaired" but the ability of each to negotiate the visible world is WAY different. [/QUOTE]
EXCELLENT analogy.
[/QUOTE]
Good analogy of a spectrum, but not for autism. If a person had various degrees of blindness, various degrees of deafness, and various degrees of personality, cognative and obsessive compulsive behavior, and yet they still called it all 'visual impairment' and said that a visually impaired person may have to be permanently institutionalized for their visual impairment or, alternatively, their visual impairment may turn out to be a gift and they might be the next Mozart - then that'd be a better analogy.
I have to agree with you. My son was diagnosed autistic at 2 years 10 months, and is 6 now. I felt like I was hit with a mack truck.
In the course of 3 years since then, I have met numerous "spectrum" kids, that certainly have a HUGE range of ability. Some, just a couple I've met actually, are totally mute, but have excellent attending skills, some talk up a storm, but make no eye contact, some speak a little only to let needs be known or answer basic questions, and then there are some in between. I have seen totally nonverbal kids have much better play skills than my son. It's quite confusing. I have to admit, that seeing some of the HF kids, I question if they were misdiagnosed. I don't see any difference in them and a child who is maybe a year younger.
I've really only seen a few "severe" kids, who fit the original picture of what I always thought autism to be....totally nonverbal, screaming, hitting themselves, and completely withdrawn.
The rest of the kids I've met are more along the middle somewhere. As for my own son, he has been labeled moderate to severe, but I certainly don't see him as severe. He loves attention, is engaging in ways that don't require language, and his is very aware of what's going on around him. His biggest issue is his communication ability and his lack of interest in other children. His language is at 1 year 10 months. But he's very smart, and know just how to manipulate when there's something he wants. He's definitely cunning
.I wish I knew how much more he's going to change and improve. Right now he is continuing first grade in a very intensive, self contained class, but is making
strides. Who knows?
nakama
I agree with what you're saying, Fred. In my humble opinion I feel they should have a different "label" than autism for the kids that would be considered quirky rather than just putting everyone under the same umbrella. I believe one day this will change and what they're diagnosing as HFA or mild PDD, etc. will be called something else.
It's a very tricky one. I sometimes feel like a fake when i sit with the mom's of more effected children. My boys do have the traits that warrent a dx though. I'm sure some day our kids will have a whole host of different dx that share some behavioral characteristics that today is known as ASD.
We do still have a lot in common though. I'm sure I can relate much easier to the probs faced by more affected autistic kids than the parents of kids who don't have asd but do have other dev probs.
The whole iq thing though is another story. I've seen very effected children who clearly have brilliant minds in their own ways, so I'm really no fan of the IQ MR link but that's for another thread.
Okay but let's say that all of the high-functioning kids then do what that parent did in micki's post and home-school. We will have tons of kids then who have NO idea how to interact with anyone! And perhaps no interest as well. Then what do they end up doing? Probably living in a group home because they can't live independently. That would involve a lot more resource dollars because that would be for the REST OF THEIR LIVES after their parents pass away!
I really am interested in hearing what tzoya has to say about this because I know she firmly believes in early intervention.
There is no way to predict what will happen to any of our kids. But putting off a diagnosis until age 7 is going back to where we were 10 years ago and I in NO WAY want that to happen!
I'm not offended by the post fred - just surprised. I definitely am one of the parents who have a mildly affected child and I am and have gotten a lot of resources for him. I have paid out of my pocket for a LOT of them, but he has attended ECSE for two years and Head Start as well. But because he did that, I fully believe we will need few supports for him in kindergarten and hopefully not many as he goes through his schooling years. Only time will tell - but if we had waited to get a diagnosis - we would be at our wits' end right now and he would fail in kindergarten almost definitely.
I just vehemently disagree with this view, but I'm not offended!
They want parents to be educated on the 'spectrum' nature of the condition but that won't happen because, as I've mentioned, there's a large industry dedicated to keeping parents locked in desperation and willing to pay large sums of money for their chance at 'recovery' and parents themselves are all over the place believing in and reinforcing this notion.
Snoop, you're in CA, right? Different part of the world, there, compared to the deep south regarding benefits for kids with special needs.
Mason was just recently dx'd...he is 6...his psych wrote that he is in the moderate range.
Since his dx it seems the school has completely turned around. He had other dx's and did get some help but it didn't matter as far as services until they heard the word autism.
Now we did his IEP in May and I was floored by the things they were offering him. I don't want to start any problems and hope I don't offend anyone by saying this, but I am taking all I can get. I don't know if there are more severely children being affected, in that maybe Mason is taking away from the services that they could be getting, but for me and Mason's future...I am taking it...and will continue to fight for more if I feel he would benefit from it.
Sorry.
Also, we donated a LOT of items and money to Head Start. Not enough to fully cover the cost of educating my son for the year, I'm sure - but virtually no other parents there can do that. So, we tried to do what we could to help - in donating time, clothes, books, and money. I do that with all of the places that help my son. Maybe because I feel a little guilty for him getting all the services - but I have been assured by many teachers and service providers that he truly needs these and that he will do well solely because we have done so much for him!
Niki - I guess that is partly where I'm coming from as well.
fred - no, we are not in California. For ds' sake - I wish we were (or NY!). We are in MN, which has more services than the deep south - but we too are extremely affected by deep cuts in education and social services. But, better than the Carolinas I'm sure!
I guess that's the thing - if you change the diagnosis, then our kids will get tons less services and most of us are fighting for what we have NOW. I can't imagine what would happen if they changed his diagnosis!
I'm not really sure what head start is, but maybe it's like developmental preschool? That's what the girls got, too. I think that's an appropriate placement for a HFA child - I don't think anyone would argue that. I also don't blame a parent for taking what they can get. I do feel bad for parents who are really struggling with major cases of autism and cannot gain access to appropriate services.
Again, this is more about the overly broad nature of the dx and not about parents so much other than the overly broad dx will have a tendency to freak out lots of parents needlessly and pit parents of kids who are it opposite end of the spectrum against each other.
I haven't even touched on angsty teenagers and young adults self diagnosising themselves and calling parents who seek interventions for their very severely affected children "curebies" and mocking them and typical people in general, but that's part of this, too.
No Head Start is a program that is federally funded for kids who are "in need". This generally means financially. They reserve 10% of their slots for kids with special needs. Generally, it is NT kids who are in poverty who attend. You have to meet a certain income requirement (I believe it is poverty level - can't remember, which is sad as I used to work there!). But, if your child has special needs, they waive the income requirement and go by what your child needs. Since I used to work there, I had connections and also his Children's Mental Health worker recommended him for it - she felt it was the ideal placement for him (and it was!).
I of course feel bad for parents who are really struggling with kids who are on the severe end of the spectrum - I think about them every day! And, I know there are several on this board. I in no way want to take away services from their kids, but I also want my child to be the best person he can be as well and will do what I need to in order to ensure he gets what he needs.
I lived in SC and honestly I thought the services were great. Medicare approved with Autism diagnosis with no need to check our income. Respite. Recently I was told that the medicare there is paying for ABA now. The county I lived in had some schools with ABA and also Teaach so you could choose. You can even qualify for a PCA with the medicare. Department of Disabilities: THey pay for swimming lessons and also some gym programs. Respite. Adam also still had an early interventionist that stayed with him past 3 years old because of the diagnosis and she specialized in dealing with children who have Autism. HE got a LOT when we lived there.
Oh and of course everything that came with the school system too. OT PT ST etc.
Karrie
I too feel sorry for parents with severe cases who might not be getting any services.
We only get services through the school, not the state, although I am on a waiting list. I keep hoping we will get a positive plan in place before our time comes on the waiting list and maybe we won't need it.
I'm wondering how many ppl out there are getting any services? Is the number high? I guess maybe if I knew someone first hand, and knew Mason was taking away from them, I might think differently. I would never want anyone to think that I think Mason is more worthy of the services because he isn't as severly affected and has more hope...that is/and never will be the case! But I do know that I have tried to stay positive on Mason's outlook on life and want to do all I can to help him.
This is such a hard thing to think about. Fred you are a great guy in that you think about these things.
I guess I never really thought about it to this extent...just that I was so excited that we were finally getting some notice from the school. I didn't stop to think that it could be someone else losing out on services.
Good to hear from you. I am with Snoopywoman, all children who need help should get help in their area of weakness. It is in the best interest of the system to help all children be the best they can be. They are our greatest resources.
A particular diagnosis should not be the only indicator that a child should be helped. Teachers know the child who cannot write at an age appropriate level. Don't wait and see, send the child for OT evaluation within the school, let the child get help on that and let's have a parameter for knowing when that child has caught up enough. So goes for the child who needs, ST, PT, Play therapy, etc.
I applaud parents who know they don't need help and do not take it. But when a child clearly needs help but parents don't want to take it because of ego issues, it is a disservice to the child. As a tax payer, I would rather we use resources when kids are young to prepare them to be good productive members of society.
I would give up a lot to not be in the situation of "needing help" with my child. I know several kids who could have benefitted from SP/OT or play therapy who did not get it because they have good academic skills that is so unfair. Parents should not feel like they are competing against each other. I guess it is all a work in progress.
Concernedpa.
Snoop, don't think I'm criticizing you - you've done everything the way it should be done and I have no problems with it. My beef is more philosophical in nature - that your son should receieve the same DX as the very severe, classicly autistic person - doesn't make sense and is harmful in some cases. It was harmful for me, specifically. I've spent the last year of my life in a state of near despair and only the girls mother has kept an even keel. Otherwise, these children may have been subjected to all kinds of needless and possibly risky treatments and my life savings would be gone and I'd probably have accrued signficiant debt, in addition. Thank God for her level head, really - as much as I complain. There have been plenty of people perfectly willing to take my money. But that probably says more about me than about the diagnostic manual, however, I see many parents who are dealing with this sort of desperation in the wide world and it's never a good thing.Wow karjab - those are AMAZING services! Much better than we get here, let me tell you!
I do know that we could probably get more, but again, I don't want to take away from others. Respite would be wonderful for me (and dh) but not so wonderful for ds, in my opinion.
I have a friend who has a PCA - and she needs one! But, I don't feel like we do. I can do just fine on my own. We could probably qualify - but I just don't feel like that is a necessity at this point.
Well anyway, I have to go do other things besides post here!
ETA: Head start is 4 yrs and up, we will be getting special ed preschool and then head start. I don't remember what the income question was for...I'll have to ask.
Everyone here knows so much about the system, I just assumed we'd be looked after and we are but I guess I'll spend more time on this.
Okay - one last post.
Fred - you are a caring, concerned parent who wants the best for his kids. I think your wife and you have probably balanced each other well. From what you have said, she wants less intervention than I think is good and you (from what you just posted) probably wanted TOO much.
It is very sad that there are so many organizations wanting to take money from parents of kids who only want their children to be happy and healthy. I almost went there myself and it is not difficult to do! We all want our kids to be happy and healthy - but chelation would not do that for our family! Just to name one controversial topic (this was NOT to start a controversy on that topic everyone!).
I agree that my son probably should not be on the same category as those who are severely affected. However, I'm not sure how to ease the transition in terms of services though. Right now, if a child has an autism diagnosis they often automatically qualify for certain services. Obviously, those services should be tailored to the specific child's needs and hopefully, they are. But, in our state, if you have an ASD diagnosis, you automatically qualify for speech. My son doesn't need articulation and his vocabulary if way advanced. However, his pragmatics of speech and his social communication leave a lot to be desired. By getting group speech (which he would never get if he didn't have the diagnosis), he is a role model to the other kids for articulation and answering questions and they are role models to him in developing social communication. A win-win situation in my opinion and one which wouldn't happen if he didn't have the autism diagnosis.
I'm not sure of the solution and it's good you brought this to light as it has provoked a very interesting discussion and thought-provoking as well!
Well, I HAVE to go fix lunch before swim lessons now!
I'm with you Fred. Part of the problem tough is that it is hard to predict
who will be mildly affected and who more severly. Each kid develops so
differently, especially before age 7. Maybe a definite asd diagnosis should
not be made before age 7?
I also think that there are many many kids on the fringe of the spectrum
where parents really shy away from an asd diagnosis. Maybe rightfully, I
really don't know anymore. But if you look at parent sites for gifted kids
or kids with SID or 'spirited' kids - most of them sound asd to me but
noone there considers their kids to be autistic.
For example: I just talked to a friend who has a 7 year old boy. He was an
extremly fussy baby to the degree of getting dx of failure to thrive (would
scream 12 straight without eating). Started reading at age 2, developed
special interest into conifers at the same age (knew their latin names).
Continues to be very easily overstimulated and has frequent meltdowns
and anxiety attacks. No peer friends. Parents decided to homeschool. I
feel (but keep to myself) that he is AS but they want nothing to do with
the diagnosis and decided (no official dx) he has Sensory Integration
Disorder and is highly gifted.
I think the 'mild' end of the spectrum is still very very foggy as far as a
clearly defined diagnosis that both doctors and parents feel clear on.The
'stigma' of autism is only part of it, there is just so much diversity in how
our kids are.
Interesting post
glad to see you back here Fred
Actually that prognosis or lack thereof contradicts the one article from Pediatrics, doesn't it? The 3-D diagram showing how kids get better?
But I suppose, from the moment Miss Egg meets Mr. Sperm, you could say that about ANY kid!!! Hmmph. So is parenthood ALL hysterics and despair? Makes me wonder.
Maybe I'm misreading this as I see the posts that occurred since my last post. I don't have a problem with them having more discrete diagnoses - but please don't say my son shouldn't get services because he is mild! He needs them - he doesn't get as many as a child with severe autism, but he does need some. We have not done ABA - school doesn't provide it and we can't afford it privately. At his age and level of functioning, I honestly don't feel it would be worth it. He is doing really well - would not have been had we not gotten services though!
[QUOTE=snoopywoman]I do agree that there is a hysteria about "cures" and false hope is given. And the system does end up pitting parents who have kids with severe autism against parents of kids on the mild end of the spectrum.
However, again I think that if the mild kids can be given enough help to get to the point of being a tax-paying member of society - that will GIVE more to society and not take away as much in the long run.
Maybe I'm being short-sighted or missing something here?
[/QUOTE]
Many parents here "autism" and they go crazy. They hire lawyers and start hammering the school system, the start accusing the government of conspiracy and taking their kids to alternative medicine practicioners or educational therapy gurus who they would have laughed at pre-dx. They start brawling with parents of severely affected kids over the very limited special education resources. Kids who get a diagnosis of 'ADHD' or 'OCD' don't behave in this way, at least in my observation. It's not healthy behavior and good for no one. A large part is due to the vagueness of the diagnosis.
Let' face it, any sort of delay or disturbance in development is reason enough for any early intervention. It couldn't hurt, and could only help, even in mild cases. I do think that Fred makes a valid point, especially quoting what the original doctor had stated about spectrum kids either being president of a corporation, needing assistance for the rest of their lives, or falling somewhere in between. Isn't that as vague a statement that could be applied for the general population?
nakama
My dd is putting a plastic cup on my ds's hand. He's crying because he can't figure out how to get it off, and she's laughing her head off. She's much higher functioning and if she didn't have these social problems ...she doesn't qualify for any services through the school system anymore so we have to do private. I never fought for services for her, but I don't think I'll HAVE to fight for services for him.
Kids should get help as it's warranted. My girls get a minimum of help through the school system. I'm on a five year waiting list for state services. FIVE YEARS! Not a big deal for me, but what about the parents of kids who are severely affected - families that are being torn apart and in complete and utter despair having to deal with a kid who has no impulse control, no common sense, limited ability to function, and is becoming larger and stronger then their parents. They should not have to wait behind me in a queue, but they do, because our kids have the same diagnosis.
fred - did you mean the PARENTS of the kids with ADHD or OCD don't behave this way? Because there has been a lot of misdiagnosis in those areas as well. A lot of kids previously diagnosed with ADHD are now being diagnosed with autism. The ADHD never quite fit and now the parent is seeing that an autism diagnosis fits better. But yes, the hysteria happens because parents are told it is a life-long disorder that never goes away and usually these kids end up not being able to live independently.
Perhaps some education needs to be done to people diagnosing. We have NO idea what the prognosis will be for our kids because they were not diagnosing the higher-functioning kids 10 years ago - so they have no way to predict. Or maybe there should be a different diagnosis so parents don't hear "autism" and freak out! But, in my professional opinion, I feel that my son does fall on the autism spectrum and that he does exhibit symptoms that are similar to other kids on the spectrum - just not as severe. But they do prevent him from interacting in society in a typical way and do impede his social development.
Right, but social problems is much different than a kid who cannot speak or attend to basic self care needs as a teenager. Completely different set of issues. Makes no sense to call it the same thing, imo, and just muddies the water for ALL parents trying to get appropriate help for their kids.I am grateful for all my services that I receive as well and my son does need them, but I totally agree with Fred's thoughts. I was at my state's regional center where autism is one of five diagnoses that qualify for their services. After speaking to the intake person I realized that a lot of the services are for severely affected individuals but since my son is under that label he is entitled to the same services. I do at times feel with such limited funds that I may be taking away from a child that is more severely affected. It's a tough situation. Hopefully someone who is a lot smarter than me will one day figure out how to get this worked out because I think the way it is now will not work in the future.fred,
Is the waiting list you are on a specific AUTISM waiting list? Because here we just have a waiting list for funds for all kids with disabilities. So, we don't have the severe vs. mild debate.
Mainly, I think we need more funds from Congress for ALL kids with disabilities. A five year wait is CRIMINAL! I will refrain from getting into political discussion about what they could cut funding for or raise taxes on in order to get the extra funding...
I felt bad last year having my son in Head Start when I knew there was a waiting list for kids that were poor and needed the schooling. However, I also know that without Head Start last year, we would not be entering this school year without support! He made that much progress in a year.
Perhaps we need to call it something different. But, I think that could muddy the water as well - I hope the "experts" can figure out a way through and around this issue!
I was reading a blog post or something the other day, and the author wrote about a pediatrician that, when asked to give a prognosis for newly dx’s kids, would say something like, “Well, he could either end up requiring lifetime one-on-one care or he could end up the president of a billion dollar software company or anything in between”.
It occurred to me that this seems to be true and as such, the diagnosis of autism is functionally meaningless.
This is not helpful for parents who have severely affected children and it is not helpful for parents of mildly affected children. In fact, it puts these parents at odds with each other, both contending for the same limited resources and putting the special education system under incredible strain - the parents of the severe kids getting screwed in the end, as their access to resources that they truly need are consumed by kids who could make due with less.
It also creates a climate of hysterics and despair that is quite out of line with reality in many cases. This creates a climate within which a whole industry of autism “treatments” that is allowed to defraud parents, with the parents of the mildly affected kids lending credibility to the whole racket when their kids “recover”.
I hope that those who authors of the psychiatric manuals are paying attention to the drama that is playing out worldwide as parents try to figure out their reality when the guidance provided from their diagnostic manual is of limited use and, in many cases, worse than useless. A "spectrum" disorder, where the spectrum ranges from 'quirkiness' to something akin to severe mental retardation is not something that is going to work in the real world. In my opinion, we need more discrete diagnosis, or just go back to the old system of only diagnosis severe cases.
I hope this doesn't offend anyone.
fred - good to see you posting - I haven't seen many of your posts recently!
I'm a little confused here - do you not want your girls to get services? Because I would assume they would fall under the mild end and thus would not get services if they didn't have a diagnosis.
I think the diagnosing issue is a work in progress. It takes the APA many YEARS to revise a diagnostic manual such as the DSM. Until we know better how the brain works and what the root causes of autism are - I think it will be difficult to differentiate in a more discrete fashion.
I personally am thankful for ds' diagnosis and I wouldn't want it changed. He has gotten a lot of help and will be a much more productive member of society and I am confident he w