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If You Have an ASD Kid, an ADHD/ADD Kid, or If You Don't....

I want your opinion. I have been on this site for a couple of months now. My daughter was recently diagnosed with ADHD and some sensory issues (only sensory issues related to hyperactivity--not your typical sensory kid and I'm still not convinced--but I have an open mind). I also know a lot about Autism and because of this, I am drawn to the questions about these things or that sound like they are similar to these disorders. I am fascinated by the range of opinions regarding these disorders, not only of mothers on this site but of friends and family of mine, with whom I discuss my daughter. There seem to be a lot of people out there who feel that we (society) are too quick to "label kids" as ADHD or autistic etc. I've seen the phrase "be careful of the ADHD label" and "autism is a scary word," (as in you should never say it to a parent if you suspect it of their child). I am wondering how many of you actually feel that autism and ADHD are being over diagnosed in our country? If you do feel this way, may I ask if you actually have a son or daughter who has either of these disorders? I do not feel that they are being over-diagnosed. I think that is a very cynical view of things. I believe that we are becoming more AWARE of these disorders and how, not only recognize them, but treat them. And I believe that this is happening because as we evolve, as technology and medicine continue to advance, we are more and more capable of increasing the quality of life for these children.

We all want want is best for our kids and we all have a different idea of what that is. I've already seen from a couple of people's responses that many (some?) people think that parents use ADHD as an excuse for their child's bad behavior. Do you think they are pretending that their child has it? Or do you think the docs just hand out ADHD diagnoses every time someone comes in with a complaint of behavioral problems and hyperactivity? My mom had me tested when I was younger and the doc said, "Nope, she's a normal rotten kid." And he was right. I am not ADHD. I also have a friend who thought his daughter might be and they also go a "No, sorry. Just a typical energetic kid" when they got the results of the eval. I admit I am skeptical that docs are over diagnosing for the hell of it. Are parents/teachers perhaps quick to think that hyperactivity is a possible indicator of ADHD? Probably, since awareness is increasing. But that is not a diagnosis.

Would parents be mad at their nanny if she told them she saw a freckle on their son's arm that looked suspicious and that they should have it evaluated by a doctor? No, they would be thankful. But they might be seriously offended, even to the point of firing her, if she suggests autism or another behavioral disorder. The nanny is pointing out both of these things because she cares about the child and the family. And in BOTH scenarios, the earlier the intervention, the better. Is one PC and the other "hush -hush" because of the stigma attached to mental and behavioral health? I guess I am wondering what people think because of my daughter's diagnosis and I want to know what she will face as she gets older.

**I promise not be offended by anyone who disagrees with me. :) We are all entitled to our own opinions and you are entitled for yours and I am ASKING for it. :) I am trying to educate myself as much as possible so that I can be the best parent I can be.

**And Amy, good question regarding treatments. I was going to get into that too but I didn't want to write a novel :)

**One more thing, I think that if you feel the diagnosis or opinion you get regarding your child is incorrect you should by no means accept it. I have researched and researched and done my own homework. I have had to work to convince a therapist and teacher that my child should not be labeled as a sensory kid. The minute I said she had a lot of meltdowns when she was getting dressed they were like SENSORY. She does NOT have fits about how clothes feel--she sleeps in the scratchiest princess dresses and dress up shoes. She has fits about how clothes look-or if she can't find them. For the parents who have received a true diagnosis (that they agree with)--I think it is unfair to say that these parents are just trying to justify their kids behavior etc. They are most likely working proactively to change that behavior. If you are getting a true diagnosis, it involves a heck of a lot more than telling the doc "my kid is hyper and doesn't listen." If you've gone through the process you know that already. And you also know that it is incredibly hurtful when people assume that you are not parenting correctly or that you are trying to hide behind the diagnosis.

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Wow! This is so interesting. I am learning A LOT. Keep the answers coming! To Julie V. You are wrong. ADHD is a medical diagnosis. Not a label. It is like a freckle on the arm that could be cancer or could be nothing. Children with these disorders have different brains....brains that do NOT function like typical kids in terms of focus, activity level etc. That mis-assumption is partly why people do not understand children with ASD or ADHD/ADD. Maybe depression does not exist either? Some people are happier, some people are sadder--that kind of thing? After all, there is no physiological test for depression either. **I did not say I would not tell people they are wrong when they present an incorrect FACT. Julie may have meant it as an opinion but she presented it as fact and that needs to be addressed.

So this what I think people need to know: there is a big difference between a label and a diagnosis. We should be very clear not to confuse the two. You cannot get a diagnosis unless your child has had an evaluation by a medical doctor or a team of specialists. Another thing: hyperactivity does not equal ADHD. This is probably the biggest misconception there is out there about ADHD. If that was all that was going on with my daughter we never would have had her evaluated. We weren't concerned with the hyperactivity or impulsiveness. We were concerned with her extreme tantrums, rages and low frustration tolerance. People jump to the conclusion that if you have an ADHD kid, they are exactly like their own active, energetic kid who responds to discipline or whatever other techniques they've used. These things don't work for a TRUE ADHD kid. Please don't jump to the conclusion that we have diagnosed our child so that we can medicate her hyperactivity or that we just can't handle our child. My brother-in-law also thinks that people are over-diagnosing ADHD. Why? He has nothing whatsoever to back this up. Has he talked to parents? Does he know the whole story or how they came to that conclusion? Has he raised an ACTUAL ADHD kid? No. He just has decided that is the case. After all, his kid gets hyper and doesn't always listen and he's not ADHD.

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Wow! No disagreements here! I have to be honest, I don't like that my daughter has Asperger's. If I had my choice, she would be "typical." That being said, the label drives the services. And the services have been phenomenal for her! She started getting services in January 2009, and I now have a different daughter! Both the psychologist that assessed her and a leader autism expert who have met her now think she'll be off the spectrum soon. I think she has a ways to go, but we're actually seeing the light at the end of the tunnel.

If we didn't do behavior therapy, I think my daughter would still have the problems she had a year ago. No friends, tantrums, rigidity, pulling her hair out, unhappy. So, getting her assessed and getting her the Asperger label helped--tremendously. Do I want her to have the label the rest of her life? If she needed it, then yes...but we're VERY hopeful that we'll be dropping it soon!

C.
www.littlebitquirky.blogspot.com

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I think kids are being diagnosed more appropriatly now than 15 or 20 years ago. My son was diagnosed with nadhd and ocd about 15 years ago. We had all kinds of trouble with the school system and with other kids. I am now raising my two grandchildren(not my son's kids) and they have been diagnosed as being on the autism spectrum. They attend public kindergarten and pre-school, and also go to a private autism day treatment program . They are doing extremely well. their behavior before diagnosis was almost identical to my son's behavior. Now I wonder if he wasn't on the spectrum, and if he had been diagnosed properly his life could have been so much better in school.

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Oh McK4 you know how to hit the hot button! ;)

I actually both agree and disagree with you. I'm a semi-retired teacher (a little joke I use, cuz I'm just raising my kiddos right now) but I have spent a significant amount of time with kids who have had all these issues. I mostly agree with you that as a society we are becoming more aware of these issues and therefore can disgnose and treat them better. However, labels are not always a good thing. Because labels do a have a stigma in society you want to be careful which of those is given to your child. Many people, teachers, clergy, friends, and strangers alike, treat people differently because they are "labeled". It is not right, but it is true. Sometimes people have lower expectations of a person with a label, and that is wrong. Yes, sometimes thing will need to be modified, etc. for your child and other children, but I hate to see children who get the short end of the stick b/c they have a label, and it happens a lot.

I also agree with Amy about the over medication issue. Many times medication is not handled appropriately, especially in young children. Teachers and parents don't communicate fully and sometimes, especially those on ADHD drugs go all day without eating b/c the meds make them less hungry and the other party always thinks the other one is feeding them (I saw that happen with more than one kid at my school!). Also, not all people need to be on these drugs FOREVER, but there is very little education and/or treatment to get kids off the drugs at some point. It is possible to wean off the drugs ina few years, once kids develop better skills on how to better function in society. That being said, I must play my own devil's advocate however, and point out that for people who truly do need the meds, if they don't get them they are more likely to self medicate with illegial use of drugs, and obvioulsy no parent wants that!

In the end, I think you're doing the right thing to talk about it and make your child feel good about who they are no matter what. It's also great that you're talking about it to everyone to remove the stigma, but remember that not everyone is as open minded as you, and you want your child to every chance possible, so don't ever let her or any one else use the diagnosis as a crutch!

(what was that you said about a novel!!?) ;)

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I have known my husband since we were in middle school. His parents always had what they felt was a "hard time with him paying attention". He always seemed disorganized, could not sit still, blah, blah, blah.. Back in the day they had him evaluated and the experts told them he was just a "very active boy" and to" keep him busy and stay on him". He was breast fed for a year, which was very unusual back then. She made his own baby food again considered "way out there" back in the day. So he was always being monitored with what he ate.

To make matters worse, he actually overheard his mother ask one doctor if her son could be retarded? Can you imagine how my husband felt as a little boy? He knew he was good at understanding school and all subjects, he just could not stay on task, could not keep up with time, dates, and focus. SO he always had a terrible self esteem pronblem. We have been married almost 30 years and he is an Adult with ADHD. He REFUSES to take medication! It is getting worse. He is always stressed because he has to keep it together at work and with his own business..

We even had a "Discussion" today about a very important incident that happened about 10 years ago and he has NO memory of it! This is a significant event.. I was so upset, I told him, "Your ADHD is getting worse as you age." He said he refuses to take the medication because "of the stigma".. I asked him who was going to know?

What I am saying is I think there has always been a lot of ADHD, Aspergers etc.. we just thought that boys were like this sometimes.. I think some families were better than others at helping their children find coping skills.

Personally, I also think it is happening more and more because the people that in the past may not have met others like themselves, Aspbergers especially, used to be the "absent minded professor types or scientist or "way out there artist" that did not bump into other people like them. With all of the technology and use of computers and Nerds starting to rule our world and women now educated and accepted into these professions, they are marrying and having children and these are inherited genes..

My sister in law has a child that is Aspbergers and she kind of acts like it is my husbands fault! I reminded her that her own husband is a perfect example of Aspbergers,, He did not want to kiss her in front of people when they got married. He can barely make eye contact with people. He has to be kept on a very specific schedule. And he has an anxiety disorder.
So these is 2 people with genes marrying.. Their son has had extensive intervention since he was 3. He is extremely intelligent, but he had and still has to be taught how to interact with all people. He has never been able to tell his mother he loves her, because he says "it does not make sense".

The stigma comes from parents and people who have no first hand knowledge. I say, if you have not lived it, stay out of the discussion, you have no idea how your own grandchildren may turn out. Help take away the shame, the reluctance for parents to try to figure out what is going on. Accept that there are real cases of these differences and do not worry about it if it does not affect you or your children.

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I am not even going to read the other responses, out of fear of my blood pressure rising. I know there are a lot of people with no experience with ADHD who don't "believe" in it or think it's "overdiagnosed."

I just wanted to tell you I am the parent of a child with this condition and it's VERY real. America, in general, has a hard time accepting mental disabilities and you combine that with this condition being in children (in addition to adults), you will get naysayers. When I hear it's "overdiagnosed," why is it from people who have never even been through the evaluation process? Our son's behavior has always been off the charts, from the time he could walk. He'd run across the furniture nonstop (no matter how we tried to stop him), literally bounce off the walls, couldn't sit still for more than one minute. He was also very aggressive, hitting me, clawing my skin, punching me, spitting on me when I'd take him to time out. I felt trapped in an abusive relationship. We'd get stares and mean comments about his behavior in public. He was uncontrollable. We're both college-educated parents who read all the parenting books, applied consistent and loving care, and we were driven into the ground. People should walk a mile in the shoes of a parent dealing with ADHD before they even think of commenting. No one tells parents of kids with diabetes that it's a made up condition or overdiagnosed, or those whose kids have heart conditions that their parenting is to blame (maybe if you didn't encourage your child to run so much s/he'd be fine) ... can you imagine the outrage if that happened?

When our son's preschool commented about his extreme behavior, we sought help from the doctors at Kaiser. Our son's pediatrician knew immediately something was wrong, and we went to a child psychologist. We got tips from him that didn't work. He then sent us to a behavioral therapist. More tips that didn't work. This dragged out for some time. By three and a half, the preschool gave up and kicked out our son. It was only then that we met with a child psychiatrist to talk about medication, because our son was a danger to others. We ended up starting with mild non-ADHD meds that did nothing. We then tried ADHD meds when he was four and everything changed -- life changing improvement for everyone and our son was so much happier. We didn't get the official diagnosis for almost two years, even though our son was a neon sign for ADHD. How is this overdiagnosis or a rush to diagnose? We jumped through many, many hoops to get the help our son needed. It was a very lengthy, thorough evaluation.

There was no rush to medicate and no rush to diagnose. Just a collaborative effort with the medical professionals to help our son.
P.S. I gladly accept the "label" of his medical condition any day over the previous label he had from others (including teachers, administrators and other parents) of "bad kid." And this was when he was just three years old. People are not kind to kids with special needs.

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I knew my son had ADHD early on (my husband has it and they are like two peas in a pod) and I wanted the diagnosis so he would qualify for the help he needs to succeed in school and life. At the beginning of this school year, he was failing all of his computerized reading quizzes because the internet wasn't fast enough for him. He was just clicking the mouse all over the place thinking it would speed it up. His teacher actually thought he just wasn't smart enough to use a computer. He started on medication in December and he now has over 100 reading points (for which he had to read over 20 chapter books). He is reading and comprehending at the 3rd grade level and he just turned 7. Without his medication, he just doesn't have the ability to make the choices his brain is telling him to make. Before the meds, he would do something he absolutely knew was naughty and then he would have this terrifed look on his face, like, "did I really do that?" I am not afraid of this diagnosis. My son is brilliant, athletic, and musically talented. He is a loving big brother and son. He stands up for his friends when others treat them badly. His medication helps him follow through on his decisions and make the good choices he desperately wants to make. The diagnosis allows him to see a therapist who is teaching him coping skills to deal with his anger and anxiety brought on from people thinking he was just a bad seed for 6 1/2 years.

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Hey there -

I was diagnosed with ADD when I was 12. I DEFINITELY feel it was legitimate as I still see it in my daily life now, although I've learned to balance it and work with it so that I am accomplishing things.

I hate using the "ADD" abbreviation because everyone seems to use it now to describe people who are flighty or flaky. And that really bothers me because it is SO much more than just someone who is 'flaky' or 'random' or is more talkative than others. I'm sick of hearing it on TV shows and in movies... like, "Ugh I forgot my purse! I am so ADD!".... or for example, "My class notes are so unorganized, MAN I am so ADD!".... that kind of thing is what I'm referring to.

As an adult who actually has it, I get aggravated because I don't think its funny. Its really difficult to learn to schedule a routine and make appointments and do housework and (for me) homeschool with ADD. I have to try twice as hard as everyone else to remember things, to be overly-organized and to be almost a little rigid, because it helps me stay on track.

I personally feel that the medical advancements are only going to keep coming, and we will soon be seeing more and better ways to help diagnose and treat disorders like these, and Autism and other related disorders. I'm actually quite thankful at the medical research being done because I believe that progress is necessary in helping kids with Autism and other PDD's (Pervasive Development Disorders) I don't feel that its being over diagnosed. I think that people are just more aware of it and a lot of afraid - so they tend to be more on the lookout.

Perhaps another good question to add to this is this;

How do yo guys feel about the treatments? Does anyone feel that (aside from the diagnosing) there is an over-medicating issue?

Just curious. I've heard a few arguments over this one within my own group of friends so I'm just wondering...

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I just wanted to say that I am a mom to an almost 4 year old aspie. He was diagnosed on his third birthday and I agree with everything you wrote. It seems to me that the ones who think these disorders are over-diagnosed are the ones who do not have kids and whose kids are per se normal. I admit that I was one of those people prior to having kids. Now, I feel bad for being judgemental. I had no idea what parents go through. It has been an eye opening experience.

I hope your post helps people become more open minded. It is really hard when people assume that we do not displine our child. We do. He just responds to different techniques than most kids. The judgements are hard to take when it was the hardest thing to admit that something was not quite right and it to be reaffirmed by doctors.

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As a species, we taxonomize (give things specific names and relate them to groups). Canis Lupus (wolf). Canis Lupis Familiaris (dog). Rain, torrent, torrential downpour, drizzle, mist. Wheat, oats, rye. Cell, tissue, organ, organ system. The periodic table of the elements, molecules, substances. Music, r&b, rap, soul, jazz, rock, alternative, classical, instrumental, vocal, etc. Heck, we even taxonomize our religions and our colors (as anyone who has ever stared at 1000 colors of white will attest to).

A label is nothing more than a word trying to define something, to taxonomize it. It is *fundamentally* how we define our world and our selves.

The very first thing that we start teaching our children are names. Our names (mama, dada) names for foods (baba, milk) names for actions/ colors/ feelings/ concepts. Through names we learn to interact with our world.

Do we get things wrong? Absolutely. Especially those who are unfamiliar with them.

Take the following parallel:

A person who has never seen wolves before, but has read about them/ heard about them, may see a bunch of huskies running in the snow and think that they're seeing wolves. They're wrong. But that doesn't mean that wolves don't exist.

ADHD runs (skips, hops, slides, & gallops) through my family. It's the *BIGGEST* blessing, and I wouldn't want life any other way:

- The uncle with a double PhD in astrophysics who instead ran his own (immensely successful) adventure gear company for over 30 years and spent 6 months a year kayaking, mountain climbing, skiing, hiking, and in every other way propelling his body around the world. Who, at his eventual death from an avalanche in his 60's had over 500 people at his wake and several PALLETS of Pepsi (because he always had one with him), set up as kind of a shrine.

The thoracic surgeon who still made housecalls, and who also owned a bicycle shop and who taught his daughters, grandaughters, & nieces how to type so they'd never be desperate and hire the "wrong" secretary when they were in a bind (I just love he assumed his female relatives would HAVE secretaries... instead of be them... he was born in 1909)

The NASA engineer/inventor folks, military types, the writers, artists, and professors. The adventurers, explorers, housewives who take 3 kids (2 in diapers) on out-of-country "explores" just to see what the world is like, and all of those in my family who just take a different approach to life than the world at large.

We adhd types are very obvious in some respects. It's a great pity that the modern day schooling system is set up to quash all the gifts of adhd, while bringing out all the negatives. Number one BEST trick for an adhd kid? Instead of medicating them, throw them in a gifted class and give 'em a can of coke (or pepsi ;). ADHD schools are ALMOST indistinguishable from Gifted schools (the two tend to come hand in hand). But they tend to have a lot more physical activity.

ADHD IS massively overdiagnosed, although the world at large is getting better at seeing huskies instead of wolves. In the meantime, while the world sorts itself... we'll continue to play.

Speaking of which... it's time to take "Black Ships Before Troy", and our algebra, and go snowboarding.

Happy Easter

:)

R

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Disclaimer- I have NO special experience with ASD beyond some aquaintances, and do not have a child on the spectrum. I DO have a sister who is a special ed teacher, specializing in Austism Spectrum Disorder, who is also dylsexic herself, and a stepdad (always been my 'dad') who is ADD. So those are my lack of credentials. :)

What I wanted to tell you was what my sister has told me a few times when we talk about the subject- The number of children on the Autism Spectrum have definitely increased in recent years. At the same time, the numbers of children who are diagnosed with things like Mild Mental Retardation have gone down in direct correlation. That is basically an obsolete diagnosis, and now the medical community has the ability to better diagnose children with an actual disorder instead of a catch-all term that really means nothing. So it is a matter of advances in medicine, and like you said, an awareness of what is actually going on. In my completely uneducated opinion, I agree with her on this.

She also sees overdiagnosis in the course of her job, and definitely some people who use the diagnosis as an excuse for poor parenting. But that is not the majority, just a few bad apples like you find in any group.

As far as ADD/ADHD, it drives me crazy to hear people say they are made up disorders. When you live with someone who has it and definitely needs to be medicated (but stubbornly refuses sometimes) you know it is real. Sure, it can also be overdiagnosed and overmedicated. I have known people that I am pretty sure are ADD but have chosen careers and lifestyles where they thrive and have no need for medication. I think that is wonderful. And I've known other people who should take some parenting classes and stop giving thier kids so much junk food. It annoys me to see perfectly normal people classified and medicated, and it annoys me to see people in total denial about a condition that there is treatment for.

I also agree (and hope that I will follow this thought if my son ever needs treatment for something) that it is better to know and be getting help. Whether you choose diet or medication, or whatever you need to do, getting help if you need it and living a full and happy life should be most important. I would also want people to know that my child had a disorder and not just a lack of social skills. That is the EXACT arguement we made with my dad at one point. He has other issues too, and at one point the doctors thought he was bipolar, but he refuses to seek treatment to figure out exactly what he needs. He dreads the label and is ashamed. We kept asking him "Wouldn't you want to know there is a reason you act the way you do sometimes, and that you aren't just a ____ (fill in the blank with whatever is most appropriate)?" Isn't it strange the way society places a stigma on behavioral/mental/emotional disorders, but not physical ones? People wouldn't be ashamed to admit having a disease of the body, but as soon as it is a mental issue, there is shame and insecurity. I find it sad. We tell my dad all the time- if you had cancer, you'd see the doctor and take your medication. Although with him I am not so sure that is true anymore. And even though I think it is totally ridiculous, I still sometimes feel weird telling people I have depression and anxiety issues. And that is just for ANXIETY! So, I make myself. If it comes up in a discussion, I tell people. Otherwise how will the stigma ever go away?

Since I don't have a child with a disorder, I can't speak to the issue of labeling, but I do know from my sister and friends that there are pros and cons. It think it is a tough call for parents, and I think it is a shame that it is, because getting your child help should not be a tough call. It shouldn't be looked down on. Parents shouldn't get upset if you say the "A" word, and no one should be placing any blame. Just getting kids help if they need it.

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