Changes to the DSM-5 mean no Asperger Syndrome diagnosis in the future

Lisa - posted on 06/06/2012 ( 101 moms have responded )

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Quoting from a site discussing the upcoming changes to the DSM:

"Most significant for people in the autism community will be the removal of two existing autism spectrum diagnoses - PDD-NOS and Asperger syndrome - from the manual."

I have mixed feelings about this. As we are just in the process of getting our son diagnosed (1 meeting left until it is official), we are being warned by all the doctors and psychologists not to get used to the term, Asperger's Syndrome. Yet, I feel it is more specific than just saying that he is on the autism spectrum. So, I'm wondering how other parents feel about this. My son is so hyper verbal, you can rarely get a word in and he's been reading since he was 3.5 years old. So, when I tell a relative or friend that he has high functioning autism, they are very confused. Most people who don't have autism in the family think only of classic autism. But, Asperger Syndrome is so much more specific and since he has every defining characteristic, I can tell them to look it up and then they understand.

I'm not sure why this change is being made but I think it will ultimately hurt people like my son.

How do you all feel?

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Susan - posted on 06/12/2012

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Christina, you couldn't be more wrong. I don't know how you, as a psychologist, can deny the severity of this condition or suggest that parents somehow want their children to be affected with a disorder that can be so handicapping. I've known a lot of parents of children with ASDs, and I've never known a single one who *wanted* their child to be labeled. Most actually lose precious time because they try to deny that there is in fact a problem.

I know because I've lived it. I have five children. Two are neurotypical, but I also have three sons (ages 20, 17, and 14) with what's currently diagnosed as Asperger's Syndrome. Each of them is affected to different degrees. Our oldest is our ward because his case is severe enough that he can't independently care for himself at this point in time. All three boys had such severe social difficulties that we had to pull them from school and homeschool them for at least a couple of years (with the alternative being placement in the school's Emotionally Disturbed program). None of them has had a childhood full of friends, birthday parties, sports teams, camp, or any of the other social activities you hope your children will experience. I promise you that I did not want this diagnosis for any of them. In fact, I've cried and worried about their futures a great deal over the years.

Another point I want to make is that, although it's often difficult to diagnose a child with high-functioning autism until they're in school, it's not impossible. Early intervention can make an enormous difference in how functional the child eventually grows up to be. Sadly for our oldest son, AS was virtually unknown 20 years ago. When I took my son to the doctor when he was 3yo to tell him that something was wrong, the fact that my son was already reading hard-cover novels and very verbal led the doctor to tell me that boys developed more slowly and to give things time before I worried. I was so relieved to be reassured. But I was so wrong to doubt my instincts, because, unfortunately, I was right, and my son did have autism. Because I wanted him not to have an incurable condition, I believed his doctor then and again when my son was 4 and again when he was 5 1/2. Because I was in denial, we missed that early intervention window. I'm still hoping that someday my son will be able to live on his own, but to be honest with you, I'm really worried that will never happen. If only his doctor had taken my concerns seriously in the first place. Some of those 3.5yo children need to see professionals who will value their parents' concerns.

If a parent comes to you with concerns about her child's development, please take her seriously. If she's right and you help her get help, you may be changing the entire course of a child's life for the better.

Anaquita - posted on 06/10/2012

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Christina, please don't take this as a personal attack, as it's not meant to be. But I couldn't not say anything.

If I remember right from other posts, Lisa' s son is older than that now. She said he had been reading SINCE he was 3.5. In fact as it sounds like he has Aspergers (though he'll be rolled into a HFA diagnosis due to the changes) chances are he's in school, as that's when Aspergers and HFA become more noticeable.

That's how it was for my son. I had him checked at age 5, due to the pre-k teachers urging me too, though he didn't think he saw any signs. Two more years of school, more symptoms later, and a different pediatrician, we finally got a proper referral to a pediatric neurologist who made the diagnosis of Aspergers. There's no longer any question that he has it. It makes me wonder if he had seen the neurologist at age 5, and qualified for social behavioral therapy then, how many of the social deficits he developed quite a bit further from age 5 to 7 could have been softened or prevented.

As a parent how could we NOT be concerned about our children and their mentalities? I doubt most parents look up diagnosis to find faults. If anything they likely type in symptoms they observe, to try to figure out if their children ought to be seen by someone, because their gut instincts tell them something is off. And in the case of Aspergers, Autism, and PDD-NOS, the earlier you see someone, and get a diagnosis (if they actually are on the spectrum) the earlier you can get them into interventions to help them succeed in life, and keep things from getting too clinically severe. I'm sure this is true of many things.

And the changes here is concerning to many because Aspergers and PDD-NOS are on the higher end of the spectrum. And from what I've read, only those with a diagnosis of either, who's what they consider "clinically severe enough" to be given the newly written HFA diagnosis will be rolled into it. It has the potential to completely disqualify those who are "less severe/less obvious" from therapies and school aid that would actually help them from falling behind, or having things develop into something more clinically severe. Which would hurt their chances on being able to live happy productive lives as adults.

Vegan - posted on 06/19/2012

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Hmm I don’t know about you, but I am not a mother to wait it out. If there is a problem with my children I research and get the medical advice that is out there at this time for them. I don’t know any mother who looks for a label. I was looking on how to parent my stepson as the typical parenting strategies did not work. We had family therapy, school IEP, he had individual therapy. The only thing peditriticion wanted to do was diagnose ADD and medicate. OH NO NOT MY KIDS. Whoever this psychologist is preaching and assuming all parents (especially mothers) don’t try other outlets and lets the school be the only diagnosis is well I think you need a psychologist and I feel for your patients. Oh yea and your sweet comment about the fathers, where are the fathers. Well the fathers are there but if they have Asperger’s then they are not there. You see having a child with Asperger’s is one thing but having a father (spouse) with it is another issue. Women with husbands who have Asperger’s know what I mean. When I went looking for answers to my questions I went to a neurologist, psychiatrist, counselors, physicians, got blood test, food allergies, environments tested. That costs so much money that is not even funny. Don’t’ get me started on the pricing for HOLISTIC DOCTORS…one visit with you would be 10 copays for my sons behavioral health therapy. I’m sorry but reading your post you grouped so many women under one umbrella…which most do in your field. And to us moms, never, ever, let what a DOCTOR or a HOLISTIC DOCTOR stop you from moving forward and finding answers to your questions for your child. Rule out everything you can. Every child is different, raised differently, and copes differently. I think this psychologist on here is afraid of her own child’s future and deems herself superior since she is stating medication is terrible. I chose not to medicate my stepson because where he was at with his issues, it did not warrant medication. Teachers pushed for it so that they could handle him better at school. Pediatricians push it because…well that’s all they know if they don’t have an answer just medicate. However, now that he is going into his teens, I am reviewing many other options as he is becoming more aggressive verbally and physically. Holistic medicine may work at one time but you might have to change things as they get older. It all depends on you, your child, your environment, your knowledge on food, your time and unfortunately the amount of money you have. If I had no other outlets other than being able to see a clinic I would put him on medication. If you have the means for something else, then please try and do that first. NO ONE and I MEAN NO ONE can understand what having an autistic child (no matter where on the spectrum) does to you as a human being let alone being a mother. Everything you were taught on raising kids is tossed out the window and you have to become a damn nutritionist, pharmacist, PSYCHOLOGIST and advocate for your child. Oh and let’s not forget our NT children and/or spouse. There is so much going on don’t judge anyone unless you walk their shoes. To all the women and men dealing with autism I commend you for your strengths to keep moving forward. Don’t give up, and it’s ok for you to actually have a meltdown as the caregiver. NO one is perfect.

Anaquita - posted on 06/11/2012

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And Autism/Aspergers/PDD-NOS, is not a mental illness, but a neurological disorder. There is a difference.

Anaquita - posted on 06/13/2012

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Oh geez, I get busy, walk away, and come back and I almost feel like I need popcorn. Hah.

Okay so things were getting a tad vicious. Christina, I honestly don't think you meant to be judgmental, but do take account that sometimes one can seem that way in text. Remember we're not seeing you, your facial expressions, tone, and the like. The fact I didn't take offense is why I answered your questions about my ex. Not that I feel I have anything to hide. Also take into account that we get a lot of flack from society, and often times even family, for our children's problems. Some people assume they're just badly behaved, and refuse to believe they have Aspergers/PDD-NOS/etc, because they're not lost in their own world. Or say, how my son is warm, friendly, and quite loving. Not the stereo-typical model of an emotionless rude robot. Or in the case of my family specifically, they don't question the diagnosis, but want nothing to do with us, because of it. All the of the crap we have to deal with from others do get us a bit more on the defensive.

At one point you did say something pretty harsh, though I think that was more frustration leaking through. Well, I hope so anyhow. Specifically I mean:
"The DSM-5 is correct by taking Aspergers out. It's an unnecessary diagnosis as your child functions and perhaps needs to be taught by parents right from wrong. Just my opinion."
That nearly got me pissed off (and it takes a fair bit, usually) until I realized you were getting pissed off yourself, though I *am* going to address it. Again, not as a personal attack, but based on my view point.

Aspergers and PDD-NOS is being eliminated, supposedly, not because they're unnecessary, but because those in charge of the DSM-V feel there's too little difference between them, and High Functioning Autism. Only the language of the DSM-IV prevents some kids from being shuffled into HFA. Remember, autism is a whole spectrum. Some have it in varying degrees. And even have varying degrees of Aspergers and PDD-NOS. This is what worries some parents. That some of the lighter cases of PDD-NOS or Aspergers won't meet the DSM-V criteria, and will be overlooked. Without the diagnosis, some kids wouldn't qualify for much needed interventions that would help keep their neurological disorder from becoming severe enough that it could impair them later on in life. The earlier the interventions, therapy, etc, the better chance of them actually succeeding and not just "functioning" becomes.

And some I know are worried they're changing it for insurance companies, so as not to have to pay for help for those who are higher functioning. Which as you said would be unethical, but insurance companies aren't known for their ethics.

While I'm 99% certain that my son's Asperger Syndrome is noticeable, and clinically severe enough to be shuffled right into the new language for HFA, as a parent I do have to worry that what if it's not severe enough?

Yes our children function. My son functions just fine, academically. Socially however, is a complete other story. And the therapies that they qualify for with the diagnosis, and other help is there to hopefully help them have a decent quality of life after they're grown. I know I don't want my son to just function. I want him to be happy. And it's not about teaching them right from wrong. I *do* that. I don't let my son use his diagnosis to get away with anything. What it is for my son is, he doesn't understand social cues, body language, facial expressions, etc. Or if he does figure out someone's emotion by their face he doesn't really *get* it. He has problems properly empathizing with others. Not because he doesn't want too, but he just has a blindness too it. He also doesn't get it when kids are picking him, misinterprets the actions of others, has problems having proper reciprocal conversation, talks in a monotone; though at a really loud level, nor does he know when he's making someone else uncomfortable, by talking to them in odd ways, like with his face directly in front of theirs. (No sense of a personal bubble) He also gets fixated on things that interest him. By fixated, I mean he could spend hours hyper-focusing, learning about and researching one subject. Little boys generally can't sit still long enough for that. There's also some sensory issues on top of that, and a few other things but I think I've listed enough to make my point that it's not some useless diagnosis that was needlessly assigned.

My son isn't violent or mean. If he misbehaves as all small children do on occasion, he has consequences. And believe me, I know by now, when he's honestly misbehaving, or something has happened that's beyond his ability to cope. Knowing these things has actually helped me be able to remove him from situations he can't deal with just yet, before a melt-down, or if I can't, I figure out why, and we work on it to prevent another one.

He's also not on medication to "control him." In fact there is no medication for Aspergers, and if there was, I likely wouldn't give it to him anyhow, as that wouldn't teach him how to cope socially, or the like.

Some kids are on medications for co-diagnosis issues, like ADHD. Granted while I think ADHD is over-diagnosed, some kids truly do have it and benefit from the right medication. The only medication my son is on, aside from a daily multivitamin, is his daily asthma medication, which he honestly does need, though I hope he someday will out grow the asthma. And while he also has an extremely mild case of tourettes, it's light enough that neither I, or the neurologist think he needs a medication for that.

Aspergers/PDD-NOS/Autism runs in all socioeconomic situations. Not just amongst those who are poor, single parent, etc. You find kids afflicted with it in two parent, good income families as well. There's clearly a genetic component. They just need to find the environmental trigger(s) on why there's an increase and to hopefully, in the future, lower the incidence of it occurring, or prevent it altogether. (Personally I feel they ought to look at the rise of autism along with the rise of GMO's, but that's another issue entirely.)

So yes, it can be hard to see your point of view, when you are coming across (though you may not mean too) as someone who thinks our kids shouldn't have the diagnosis, and that it ought to be eliminated. These are our children who are affected. We see the difficulties they go through, and we're doing the best we can for them. And so no, we can't agree with your point of view. Though we also need to keep in mind you can't truly understand ours as you aren't walking in our shoes.

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Amanda - posted on 09/18/2013

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I hate people like that we know our children more than out prior friends more than the soda in their diagnostic appointments the see goon lid calm kid it's us that see and has to deal with the meltdowns and the craziness and not being able to communicate to our kid

Amanda - posted on 09/18/2013

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I lost friends from them telling me he is normal it's my parenting but my parenting did not do this to my other 5 kids its hard enough dealing with this than getting attacked by everyone else as well

Amanda - posted on 09/18/2013

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My son is seven but I have noticed the meltdowns and dispatched behavior at 2 first i thought he was 2 he will outgrow it than I for real frustrated every year as he got worse and he would not respond to know any discipline he just does what he wants and if we don't feed him the way he wants or move the wrong way we run meltdown . We have had a pediatric assessment which led to occupational assent now language they cans give us distinguish answer but in my heart I feel it's asburgers by his poor communication anyone else been in the situation where they are fighting for diagnosis

James - posted on 03/06/2013

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Hello Mom,
James here. I wish everyone a great day.

I have just gone through my first weekend of legal separation and wanted to share how my Son Quinten is doing. He turned 5 in Dec and is diagnosed with PDD-NOS.
I am happy to say he seemed really happy and dealing with a new place very well.

Obviously, I am guessing because he can't tell but seems to be showing me with his actions. The only side effect is he got up even earlier then usual. ( 5AM ). If anyone has good advise on helping you little ones to sleep better I would love to hear it. Keep in mind I try to keep his days busy with swimming, the park, car rides, store excursions. You name it. It's not a case of "not enough activity"

Good day all!

Donna - posted on 03/05/2013

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My daughter is 8 years old was diagnosed with ADHD a year ago by a neuropsychologist. She is on medication. Her father is in her life. I can tell you that at this time if she was not on the medication she would not be able to concentrate at school. Her 1st grade teacher suggested that we have her evaluated for adhd because she could not concentrate in school. Her pediatrician felt that she needed to see the neuropsychologist to get a proper diagnosis. HE also diagnosed her with possible aspergers and she does have SPD. I was not thrilled with the thought of having to give my child medication but if that is what I have to do so she can get the best education than I will do it. DO NOT PUT ME OR OTHER MOTHERS DOWN FOR DOING WHAT IS BEST FOR OUR CHILDREN!!!!

Ann - posted on 12/18/2012

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I did not read all the comments, but this pseudo psychologist Christina talks bullshit, mother you know when your kids are different, you know that something is wrong in a very young age, don't listen to her, get diagnosis as soon as possible Do not hesitate. There is difference between 2 years old tantrum and behavior of child with spectrum. and we know it in our bones. Call it whatever you want, but do not delay diagnosis, Read on Internet that early child intervention can help children snap out of it. Unfortunately my son was diagnosed in his teens and its a bit late with all the consequences.I knew since he was 3 month old that something different, but all the doctors and psychologist told me , he will grow out of it and nothing wrong and he have this or that and only now we know the truth when its too late.listen to your guts not to Christina,She is not in the same boat as us.. Also forget about keeping your life privet, if you have kid with spectrum.
Thats the most painful part, they make you a bad parents when you are doing your best and blame his behaviour on the bad parenthood, Hate this pseudo psychologist, they ruined my health when my kids need me the most.

James - posted on 12/17/2012

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Frankly, after living with 3 years of medical hog wash I feel like they know little more then any parents do. Reading about other parents that have children diagnosed as mine but seeing such different levels of functioning makes me feel like they are a big farce for the part.

Lisa - posted on 12/13/2012

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However, soon, they will be seen as the same by professionals, schools, etc. For some of us, this is troubling.

Jane - posted on 12/12/2012

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My son is high functioning autism. The only difference between aspergers and high functioning is speech development. Children with aspergers begin talking earlier than those with high functioning autism.

Lisa - posted on 11/12/2012

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No problem Ann. I hate when people call them "tantrums" because as we know they aren't. At the beginning before my son's diagnosis, I was beginning to think I was the problem. I thought I couldn't handle my son's "tantrums" Then I started to do some research. Real research, not just google. I got a hold of medical books from my doctor and learned that they are indeed "meltdowns" and that it is normal Autistic/Asperger behavior when the brain becomes over stimulated. It actually gave me some relief to know it wasn't me losing control of my son. Now that he has his diagnosis, he can start to get the therapy he needs to help control these meltdowns.

Ann - posted on 11/08/2012

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Thank you, Lisa, for your post. My son was diagnosed with Asperger's late....as in diagnosed this past year and was 16 at the time of diagnosis. I have never (up until now) had anyone describe what life is like with my son until you did. Meltdowns...what a NIGHTMARE. The YELLING that comes out of him! As you stated....it goes on and on and on....like dealing with the ASD version of the Energizer bunny! This, and a myriad of other reasons, is why I hate the ASD diagnosis vs a specific name. I've been told to "control my kid", "medicate my kid", etc. He has gotten mouthy with me as well as youth group leaders. FRUSTRATING. It helps to know that I have folks here who deal with the same thing day in and day out.....with whom this is their NORMAL.



How do we get added to others' circles?

Lisa - posted on 11/08/2012

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Christina, I do respect your opinion as well as ever other mother's on here, but I could not just sit here when I read your post. You stated "Toddlers that young should have outbursts and misbehave" You stated you are a Psychologist, so you should know that Autistic, Asperger, PDD-NOS children do not just have tantrums. The correct medical term is a "meltdown" it is called this for a reason. They are quite severe, violent and can last for hours. Doctors often call them seizure type behaviors because there is no response when you try to calm the child down. Their brain is over loaded (over stimulated). My Autistic son has numerous holes in his bedroom wall from his head. Trust me, they are not tantrums. He hits and scratches his face and it can last for hours. Even his yelling is different. He almost sounds possessed. We have to physically restrain him until it is over. His meltdowns have gone on for 3 hours sometimes. They are not "outbursts" he has had temper tantrums and there is a big difference. I have relatives with Aspie children and they are very much the same.

Jody - posted on 11/08/2012

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Wow! This is amazing. I am an early childhood teacher with 20years experience in the field. I have 3 children my 2 eldest with ADHD and my youngest has just been diagnosed with PDD-NOS. Firstly my question to Christine is; If your child had a medical condition like asthma but was able to walk and get around ok, it only affected them if they tried to play sport or run around with their friends. Would you medicate or tell him to suck it up and get on with it? I know I would medicate. My aim is for my children to reach their potential and have no unnecessary limits and if early intervention or medication will help them achieve that then you bet I'll be in there with both boots on. Secondly whilst I am definitely not an expert on the plethora of neurological and other conditions out there, with my considerable training and lengthy experience I do feel qualified to suggest further assessment is warranted. Not only to I feel capable to do this I feel it is my responsibility to both child and family. to flag any concerns. Oh and as an aside I am happily married and my husband is very involved in his children's lives. That question was just offensive.

Sonya - posted on 11/05/2012

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I have a set of fraternal twins (6 yrs old) who are currently being tested for Asperger Syndrome. Where can I learn more about the changed to the DSM-5 and what will it mean for them as far as education etc?

Danielle - posted on 07/27/2012

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You'll have to forgive me if this has been covered because I have not gone through all the posts.

As a parent with a child with Moderate to Severe ASD I can understand why they would want to branch out, and specify the diagnosis. I feel that to compare someone with Aspergers to someone with Classic Autism is like comparing someone who is only blind to someone who is deaf and blind.

People with Aspergers have a higher success rate of living self-sustaining lives.. where as someone with Classic or Moderate Autism would obviously struggle much more throughout life.

Please don't misinterpret what I am saying!
I am not saying that people with Aspergers don't struggle.
I understand that the characteristics of the diagnosis' are very similar, but as a mother with a four year old who struggles to comprehend and can not talk I just am torn about how I feel with them being classified the same.

Miriam - posted on 07/27/2012

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I work in the mental health field and I know that the pending changes to the DSM are something that the people who are making the changes are stating will allow, "more inclusion" for people as well as availability to more services. As a parent of a child who will have to utilize those services I can honestly say I completly agree with Lisa and Annie for the following reasons:
1) As a parent I think ALL parents are hesitant to have their children labeled, however they do want their children to have the necessary services to assist them in being successful.
2) Autism effects children in many, many different ways. My second child struggled with speech and we were referred to child find and were offered Autism services, after visiting several programs that catered exclusively to that population I can't even imagine how a provider would work with my Aspergers son and the children who had Autism in that program. There needs are extremely different and I feel many parents would opt out of services rather than place their children in services.
3) I feel this is a step backwards in diagnosing rather than forwards. I feel we are back to grouping together simply because we are unable to identify at specific causation and that is mid evil in my opinion. I have met plenty of adult professors who are Aspergers but due to their academic contributions society is willing to write off their disability as eccentric.
Sorry for the rant:)

Lisa - posted on 07/26/2012

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Miriam and Annie, I have the same concerns and that is why I posted this thread. I don't think the doctors who are making the changes are thinking about practical issues like this one. With so many new Asperger Syndrome books such as The Best Kind of Different, people are starting to understand it. But, most people think of classic autism and won't understand that there is a range.

Perhaps if enough parents express these concerns, they will decide not to make the change. Or maybe that's just wishful thinking.

Annie - posted on 07/25/2012

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Miriam's argument is EXACTLY my point. Unless you are a parent or a medical person, ASD means NOTHING to most people. You say "autism" and most people do not recognize it when they look at your child...not even EDUCATORS! I have had educators tell me that my child was a "troublemaker", "psychotic", "mental", "slow", even "retarded"! I pulled my child out of school and went elsewhere.

When I say "Asperger's", relatives and friends can look up the description online. Unfortunately, just saying "autistic" gives folks the image of the worst forms of the disorder....non-verbal, non-functioning....certainly NOT intelligence.

I'm afraid that I will have to fight for I.E.P. services yet AGAIN!

Miriam - posted on 07/25/2012

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I can sympathize. We are in a smiliar situation with my son (Aspergers is in the process of being added after ADHD appearantly didn't cover everything). He also has an ADHD diagnosis and to be honest, if I say, "Aspergers" everyone who knows him would nod their head yes but if I say, "he is on the Autism Spectrum" everyone looks at me like I am crazy.

Susan - posted on 07/16/2012

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I already commented on the proposed changes few weeks ago. Thanks for posting the link. I hope other parents will comment too. I wish they would release some information about how this spectrum thing is going to work. Maybe we're all getting into a tizzy over nothing. I hope so anyway.

Lisa - posted on 07/16/2012

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There is still time for parents and other concerned people to go to the site and make comments. That is one of the reasons I posted this thread: We need to share our concerns. PDD-NOS is also gone from the new DSM. Here is the link if you want to make comments:
http://www.dsm5.org/pages/registration.a...

You have to register to make a comment but it only takes a minute. I expressed my concerns and hope others will too.

Dawn, I really wasn't trying to burst anyone's bubbles - I just didn't want others to be shocked next May when the changes become permanent.

Susan - posted on 07/16/2012

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I can actually understand why they want to change the DSM. They realized that they couldn't come up with criteria that anybody could use to define that a child has high functioning autism versus Asperger's versus PDD-NOS, but they do think they can tell when a child has *some* type of autism.

What bothers me is the "spectrum" they're introducing instead. Up until now, medical personnel determined whether a child belonged under one of the existing diagnoses. Everybody agreed that the kids with classical autism needed services, but it took a decade of raising public awareness to get the schools to recognize that the term "Asperger's" meant the child qualified for an IEP and services too (usually).

This change opens the door to having to fight that fight all over again. Someone, somewhere, is going to determine what point on the spectrum translates into services, and I don't think it will be doctors. Who will say what point on the spectrum constitutes the division point between who gets services and who doesn't? I'm concerned that the schools will be able to set that point high enough that kids who currently get services, won't necessarily qualify to continue. That would save a *lot* of money.

Lisa - posted on 07/16/2012

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Dawn, the reason I started this thread is because now is the time they are accepting comments and concerns from the public. If enough parents speak out, they may amend the changes. I don't want to cause you or anyone else more worry. (BTW, PDD-NOS is also gone in the new DSM). Sorry if this caused you undue worry.

Annie - posted on 07/16/2012

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I am concerned that we will have a harder time with IEPs. We have had to FIGHT with the schools to get IEPs in the first place! We have even had to threaten LEGAL ACTION. We are in a poor school district and the battle has been uphill to begin with!

I so hope that this does not screw up my children's education.

Dawn - posted on 07/16/2012

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I am just hanging on by my fingernails here. My son os doing SOOOOO much better here at home now that he is on the right meds for the ADHD (straterra and tenex) but what will happen at school? We are now seeing a GI doc and are waiting on some test results but he either has no BM or it is diarrea and that is even on softners/stimmulents. How will the teachers act, how will the other kids act when my son (4) has an accident or is hiding behind a cabnet? I am hopeful that his label will get him the understanding he needs. (ADHD, ODD, Mild SPD, PDD-NOS) He also seems to need more time to pick up on things--He just learned how to put on his clothes and get it right 75% of the time. He is so close to not needing a label, but at the same time it is the label that has allowed for the extra help he needs. His OT stated that he made great improvements for him, but he is further behind when compared to same age group. So it looks worse even though it is better. I was told my son would not "lose" his diagnosis, yes I am worried how it will affect him but I have enough troubles right now that I dont need to borrow from tomorrow. I have to remind myself and I will remind you'all that we can only deal with now. Solve the problem directly infront of you the rest will be as it will be. Fight then if you need to, maybe by handling the now the future will resolve itself. Please do not burst my little bubble. It is soft, pretty, and rainbow colored :)

Lisa - posted on 07/16/2012

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I think most AS will now be classified as High Functioning Autism. The rationale they use on the info page seems to imply they feel more will qualify for funding now but I still think it is a mistake.

[deleted account]

It depends if they are going to replace it with something. If ids with Asperger's will still be able to be classified under the Autism Spectrum then it wouldn't bother me as much, but if the DSM is only going to recognize Autism then I thin it's a bad idea because Asperger's can be so impactful on a person's ability to function the same as a neurotypical person

Sonja - posted on 07/12/2012

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We use Floortime with our son. I have also attended a work shop about Sensory Processing Disorders (SPD) run by Gen Jereb. She was amazing. SPD's including ASD, ADHD and behavioral problems are really interesting to me. When I attended the workshop I was amazed I knew more about SPD and how to approach problems than some professionals. Check out sensorytools.net for more info on her.

Feel free to use my analogy,
Sonja

Lisa - posted on 07/11/2012

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Sonja, great analogy!! I am going to use that myself!

And I agree about the changes and medication. We are setting up an ABA program for our son in the next few weeks as we just found out how to access our ASD funding.

Sonja - posted on 07/11/2012

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Hi my son was diagnosed with Autism less than 2 years ago. Zac was 2.5. Within a year I visited an Autism clinic in our State capital and was told he was only diagnosed with Autism because of his lack of speech. Otherwise he is showing signs of Asperger's.

I am concerned about them taking out the diagnosis of PDD-NOS and Asperger's and I don't personally agree with it. I don't entirely understand the reasoning behind taking out these diagnosises maybe to simplify the process of diagnosis as it is becoming more and more common? I also personally don't agree in the DSM5 that after experiencing 'clinical' grief for 2 weeks you can be prescribed medication. It is my belief that medication by itself will not work. These are just my opinions and I am grateful that I am able to express them here in this community. I don't have a medical degree, a psychology degree or anything I am just interested in what happens in the world of ASD and MH.

What I am is an expert on my son. He is my world 24/7. I love him to bits. He was born a preemie with holes in his heart. Which we assumed caused his developmental delay. He didn't walk until he was 18 months. He said a few words then speech disappeared. My husband and I weren't even aware that he was exhibiting signs of autism. I had a lovely woman come up to me at Gymnastics and tell me that my son was showing signs. (That isn't sarcasm she is an angel). I didn't go into denial. I just ran with it and haven't stopped in 2 years.

I think it is important to remember that we as autism mothers and fathers are very proactive when it comes to our children. That is why we research to find the best treatments for our children. Why would anyone seek out an autism, Asperger's or PDD-NOS diagnosis in the first place? Early intervention is the key for our children to manage their ASD in later life. It means a support person in a classroom or an extra person on an excursion. It means help, support and understanding for you and your child or children. Just because our chidlren are on the spectrum doesn't mean we focus on the negatives our children are talented, gifted and unique in their own special way.

As you know children on the spectrum are like this. They are just like other children their just using a different operating system. Like Microsoft and Apple :)

Dayan - posted on 07/09/2012

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I have four sons who all have a genetic neurological condition called Adrenoleukodystrophy. One of the main symptoms for this debilitating disease is ADHD. My second started exhibiting ADHD symptoms right off the bat. I know and understand that at age 3 and 4 that some of his hyperactivity could've been perceived as normal, but as a mother, I knew there was something else going on. He didn't like to be touched and preferred to be mysef than be around his brothers and he didn't get the concept of using his imagination. In addition, he didn't start speaking until he was 3.5 yrs old. I went to speach therapists, worked with his pediatrician and his peds neurologist and everyone said that he would grow out of it. I homeschooled him and his brothers for three years. Immediately, I knew that he was very bright. He picked up reading at 4 years old and enjoys reading the dictionary, encyclopedia and anything that is not fictitious. He's a sharp speller and can spell word after seeing it only once. When I decided to put the boys back in public school at the age of 7, he had an extremely hard time. Teachers subtly eluded to the fact that his idiosyncracies and social problems were due to my homeschooling him. His ADHD seemed to increase. He would get angry, throw things and put himself, his classmates and his teachers in danger. His teachers and his therapists said it was possibly an anxiety disorder or attention seeking behaviorzs. After revising his IEP and having him transferred to a public school that has special resources to help children with emotional and developmental disorders, I became fed up and began to push for an evaluation for possible Austism disorder. After a few meetings with a psychiatrist for an evaluation, it was finally determined that my son has Autism. I am relieved, because all of this time, I knew that there was something going on with my son other than his ADHD. I was the parent who received above and beyond a second opinion. No, I don't want my son to have a label, but I do want him to receive the best care that he can, be that through the school system or our medical care's services. I have a very high functioning and intelligent 9 year old son who doesn't seem to have an off switch at times for when he wants to communicate about subjects that interest him (mainly butterflies, 4-leaf clovers, spiders and corvettes) and I want to make sure I'm providing him with everything he needs to not only be successful during his compulsory age years, but well into his adult years also. I applaud all of you moms who followed their gut instincts and did what you needed to do to take care of your children. God bless.

Katherine - posted on 07/01/2012

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****ADMIN WARNING****

I have just deleted a post for a personal attack. Please keep this debate nice ladies. If you can't I will just lock it and send the appropriate warnings.

Thank you,

Katherine
Moderator

Michelle - posted on 06/25/2012

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Christina,

I do agree with some of what you are saying...I think some of the point you are trying to make is that a lot of parents notice one little thing and automatically assume something is wrong with their child. Just because a child is hyper doesn't mean they have ADHD, and in all actuality being hyper have nothing to do with the term hyperactivity for the most part when it comes to that, so yes your child is hyper...good luck, they are just hyper! lol... So I can see where you are going with trying to get a diagnosis of something at such a young age, and whether there is real importance to it.



Do kids bite? Yes they do...but maybe not to the extent that say this one particular lil guy does. Do kids have tantrums? Yes they do...but, where one child might just get upset for a brief moment, another might continuously have tantrums over something as simple as getting handed the wrong colour of crayon he/she asked for.



All i'm saying is that my son, who will be 13 years old this year, has struggled most of his life. I've always tried to say things like, he's just a boy...or...kids are always picky eaters, they are kids...etc. It's not that I was in denial per say, or even embarrassed that he could potentially be diagnosed with some type of disorder. I continually went to my doctors asking why my son stood out from the other kids...he blew it off saying they all grow at different stages, he will outgrow it. Now he is almost 13, going into grade 8 in September...and he struggles. He reads at about a grade 3 level, has a hard time with friends because a lot of the kids just think he is weird, i find even his teachers give him a hard time sometimes because without a diagnosis of anything, they just think he is a slacker or that he doesn't care. And this is so far from the truth, my son is the most gentle, well mannered little guy. Never been in trouble, does everything by the books, follows every rule with extreme detail...i just wish we knew more at a younger age, so that we could've offered him all the help we could have, instead of just the basics that is offered to your average child. It really wouldn't have changed anything for him in regards to his daily routines and our outlook on his life...I just always looked at it as a positive, rather than a negative. If we know "this" is what is making it so he has a hard time playing with kids at the park, then maybe "this" can help towards the solution...whereas without that diagnosis or knowledge of having to go around things a different way, we would have just continued to try "that" and would've just got frustrated as to why "that" wasn't working! Does that make sense at all?



My son was diagnosed with a communications learning disorder in grade 4 as per a psycho ed assessment, with pdd-nos in grade 6 and with inattentive adhd in grade 7...both by his paediatrician.

Connie - posted on 06/20/2012

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I have a soon to be 12 yr old son who was diagnosed when he was about 5 with PDD-NOS after his ped. doctor said that she had noticed that he had some Autistic tendencies so she suggested that we have him tested and we did take him to a developmental children's clinic in Kansas city, Kansas. After the testing was given it was very hard to deal with what we were being told about our son. He was tested by our school system to see if he was going to be eligible for Early Head Start and he was.. He has and IEP in school and works with a Para in other classes, he has come a long way since the day he was diagnosed and I worry about him all the time! I am not looking for a label for my son because if I could change the way his brain functions I would do it in a heart beat but I can't so I take him the way he is and move on and try to help him do the things he can do and help him with the things that are a struggle for him. I look for the little things in life that can be done like this last week he was able to ride a two wheeled bike for the first time and he can tie his shoes. My son is very high functioning in alot of areas and has more trouble in other areas and obsesses with other things forever but that is the way he is and I love him for him not for who he could have been. So I don't like that people are trying to change the way things are some book, label or not it has been that way for many years but my son is still my son and I will always try to help him be the best he can be. My only thought is what about those kids who receive SSI from social security are they going to be able to still get that support after the changes to the DSM-5!

Vegan - posted on 06/19/2012

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Thank you Lisa for doing this. There are so many of us out there going through it all without reaching out. It's just not possible and speaking to others who can relate is very healthy. And brings you new ideas for your ever changing Aspie family :) I'm on line now trying to find someone who can give therapy to my NT daughter. Not much out there for the siblings to understand who are themselves becoming a teenager.

Lisa - posted on 06/19/2012

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Vegan Queen, you said everything I was trying to convey. I really think empathy and education can only take you so far. If you don't have a child (and or husband) with AS or ASD, it is really difficult to understand how consuming it becomes and how much time and money you need to invest to help your child. Even as a teacher who works in the school system my son is about to enter, I have had to be on the phone for many hours to get the diagnosis in time to get a full time support worker next year in kindergarten. Thanks for the post, Vegan Queen!

Lisa - posted on 06/19/2012

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Julie, you can read the changes yourself at the website and even send them your concerns. I agree, Natasha. They think they are making things better by simplifying the diagnosis but I think they are messing up what has worked for Asperger's children. I wish they would leave it alone.

Natasha - posted on 06/19/2012

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I agree. My son was diagnosed with Aspe at age 2. 6months later PDD (NOS) and then a year later ADHD with PDD (NOS) ... So what now... In the country that I'm in everything is slow. SA are always the last to find out or go for skills that it a game. Where is this going to leave us... Who are these people to take away the one understanding we have of our children?

Julie - posted on 06/18/2012

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I just read on Wikipedia today that while they are considering deleting these diagnoses from the DSM, that they will be replaced by an Autism diagnosis with a severity scale.

Nicole - posted on 06/18/2012

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My son was recently diagnosed with Aspergers at age 8. We have had such an outpouring of love and support from so many people and agencies. Without all of the help, I know he would still be out of control. Since the diagnosis, we have had therapy for our son and for us. It has been a blessing. I feel the change will hurt kids who really need help.

Dawn - posted on 06/17/2012

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Me too, then they say--but he talks, dosent flap or spin how can he be autistic? He is just shy and hyper. He is young and will grow out of it. GRRRRRRRR........The kid acting up w/that lable is ok--the kid w/out it has bad parents! The school eval group told me he was too smart for help even though he has behavior problems. 5/6 months later re-eval with diagnosis (same behaviors) and "OH Autistic kids just do that--we can put him a head start class as he is developmentally delayed" No diagnosis=no help. Diagnoisis+same exact behavior= help. This is why we "need" our lables. I wish it was otherwise, but I now have documentent proof that is how it is (at least in FL)

Julie - posted on 06/16/2012

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I did NOT know this!! :( My son has PDD-NOS. No one knows what that is until I say "high functioning autism" Not cool :(

Annie - posted on 06/15/2012

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I don't wish to create a mental label on my child. The issue is that there are SO MANY versions of autism! Each does NOT act like the other. Each seems to have their own distinctions, even though they have some similarities.

When we received the diagnosis, many family and friends asked questions as to what Asperger's is. They had no problem looking online to see what the symptoms were. By using the term "autism", they immediately think of some low-functioning kid sitting in a corner withdrawn who never communicates with anyone.

It's not that I want to label my child. Most of the mainstream people have yet to realize exactly what autism IS at this point.

I do agree with Christina on one point, however. I think teachers should tell parents if they think there is an issue and advise them to get their children in to see a doctor. However, I had a couple of teachers here tell me that they thought my kids were hyperactive, bi-polar, and even said that she thought that my youngest was PSYCHOTIC! They are not licensed in neurology or psychology for that matter. I pulled my children from that school and placed them elsewhere.

Christina - posted on 06/13/2012

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That is what I was trying to do. Ultimately, if your child has a neurological problem aka "pre-existing" you mums shouldn't worry if it's changed or not. The school, the doctors, and the neuro/behavioral psychologists can't just turn their backs on your children. It's unethical.

End of discussion.

Lisa - posted on 06/13/2012

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I want to apologize to Christina for getting angry and being rude. And to thank all the mom's who have posted here. Perhaps we can redirect this thread back to a discussion of the changes to the DSM. We feel very passionately about our children and sometimes, we can get too involved and I was totally wrong.

Christina - posted on 06/13/2012

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Message from ChristinA. I'm really tired of this already. You mum's will not ever see my point of view. I'm only trying to make suggestions. I work in a clinic with psychologists dealing with children. Lisa, YOU'RE a very rude adult and in tern I believe that your critical behavior as a teacher can play out on your child. I see it all too often in my area of expertise that most mums are over critical of their children with a behavioral issue or a neurological one. Specifically to Lisa, if I spent 1000 hours of study in learning how to teach kids that wouldn't make me a teacher (or would it?) No. You are not a psychologist! Please, feel free to criticize my grammar. I'm typing on my iPhone and I didn't know I had to write an APA paper to you.
Look, take a statistical class and then we can talk, k?

Katrina - posted on 06/13/2012

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Lisa, you have your work cut out for you as it is. Thanks so much for putting this thread out there. I had no idea it was about to change until I read this thread. You should NOT have to quit your job. Those who have not lived in YOUR shoes don't know what it's like.

Christine, because I chose not to listen to my gut, but rather listen to my lack of confidence, I spent alot of time believing that I was a bad mother, that my son behaved this way. He has been what I have always called "uniquely accentric" beacuse there's no faster way to describe it.

Due to believing I was at fault, I have done many parenting courses and followed suggestions from "Super Nanny", and also read a book called "Have a New Kid By Friday" written by a family psychologist who has so many credentials behind his name, AND hasd raised children himself. I followed this method to a T. Some things improved with some of these methods/techniques, but at the same time other things were getting worse.

Every technique I have tried (from parenting programs and professionals) for bedtime have all caused nightmnares. So in a nutshell, I had tried EVERYTHING in my power to help him. If you have ideas of how this would work for a child with AS, please feel free to share. However, this is not about whether or not we neglect discipline, but rather, about how we feel about the DSM 5 and our concerns or thoughts on how it will affect our children's diagnosis and the help they may or may not receive.

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