Getting an accurate diagnosis

[Malika]

Okay, things are getting a LITTLE clearer in my mind, largely through reading many of the posts here... It seems that the evaluation of a neuro-psychologist is important if one hopes to get an accurate diagnosis. Part of my problem with "labels" is not just some philosophical objection but really, more to the point, that they seem to me so vague and unreliable. The human brain is clearly an extraordinarily sophisticated and complex mechanism, that we are very far from understanding completely... throwing out these diagnoses of supposedly neuro-biological disorders on the basis of a few questionnaires, for example, seems to me insulting of people's intelligence. So... I am heartened to learn that there may be a more reliable and solid way of going about things. If I got a diagnosis I could TRUST I would already feel happier in applying the label to my own little boy. ADHD does not seem to describe him, whereas hyperactivity does... rather than being forgetful and disordered, for example, he is highly perceptive and has a great recall of things he needs to take with him or where he has left them, for example... And there must be other children in the same boat. So it is curious to me that we haven't come up with something a bit more accurate than an ADHD catch-all... Why should not hyperactivity exist on its own, for example, presumably warranting a different treatment than inability to concentrate.
Any thoughts welcomed!

 

[BusynMember]

In the US, no diagnosis and no treatment. On the other hand, my son has improved 90% because we LET him get a diagnosis (that nobody knows if we don't tell them). Your child is adopted. Four of my children were adopted.Was he adopted from another country? You probably know very little about his genetics or background or if his birthmother used drugs or drank while she was pregnant. Adopted children are more complicated to diagnose. There could be affects due to alcohol ingestion. Also ADHD is not a major big deal in the US. If you say you have it, nobody really cares. A lot of the time, ADHD is something more serious, such as bipolar or a form of autism, which you say they do not diagnose in France. In the US, that is important for services. Perhaps in France they help the child and adult with or without a diagnosis. Every country is very different this way. Back to your son...what do you know about his biology? Do you know if his birthmother took drugs or drank while she was pregnant?

in my opinion you are obsessing too much over the label. He is who he is. He is WHAT he is. You don't need to medicate him, but to make his life easier, you may want to get help for him in the community or in school. I don't know if they do that in France. They do that here though so I just suggested it.

Although I said that ADHD is overdiagnosed, I meant that it is diagnosed too much when it is really something else. My son's ADHD turned out to be high functioning autism. I do not know what to tell you if that isn't diagnosed in France. A lot of people do have it and they struggle. My son is near adulthood and will need some services even when he graduates high school. I would rather know who he is (and his Autism Spectrum Disorders (ASD) is a big part of him, although NOT all of him) then not know. I think perhaps t here is less of a stigma here? All cultures are different.

Take some pressure off of yourself and relax. Find out what is wrong, the best way you can, and deal with it. If all they do is prescribe Ritalin for everything...in my opinion that's not going to help most children. If you don't want to medicate him, with Ritalin being the only option, I don't blame you. I'd tap into whatever resources you have there and utilize them and stop worrying about the label. My motto is: "Better to be safe than sorry."

 

[HaoZi]

rather than being forgetful and disordered, for example, he is highly perceptive and has a great recall of things he needs to take with him or where he has left them, for example.

This is pretty common in gifted people. Think the Absent-Minded Professor. Hyperactive used to be a stand-alone diagnosis but was rolled into ADHD as one of its subsets. Those without the hyperactivity are now considered ADD instead of ADHD.

 

[nvts]

Hi! A label is something you stick on a jar...it's meant to make things clearer so that when you're trying to secure services you don't have to spell out all of his issues.

For example, I have spots on my feet that get cold, am thirsty all the time, use the ladies room constantly, tired, listless at times, my cholesterol is high, and my eyesight is going. OR I'm a diabetic. People worry about labels when it comes to our situations and they really don't need to. Most people wouldn't worry about a label if it was health related, but when it involves the brain and its functions, many go balistic.

Trust me Malika, if you try to pigeon hole yourself into a diagnosis before he's tested you're going to set yourself up for disappointment. If you're right, you may possibly adopt the "why did I go to all this trouble to test him? I already knew this!" OR if you weren't right and the diagnosis is something that you may be intimidated by, you may possibly decide that the doctor doesn't know what he's talking about.

Questionaires simply help direct the doctor to the direction that he/she will test. Sort of like if you had an ear infection, you wouldn't go in an initially complain about an ingrown toenail!

My advice? Schedule the testing and enjoy your little boy - he sounds like a little guy that's probably as confused by his actions as much as you are. Love him - love yourself and keep questioning and checking in! We're here to help you as much as you need!

Beth

 

[SRL]

Okay, things are getting a LITTLE clearer in my mind, largely through reading many of the posts here... It seems that the evaluation of a neuro-psychologist is important if one hopes to get an accurate diagnosis.

I wouldn't say that a neuropsychologist is critical. What is critical is to find the most reputable specialists that's reasonable in your region and circumstances and to make sure that the problem areas are included in the evaluation. How that looks is going to depend on where one lives, the resources one has, the issues the child has, etc. It t may be a developmental pediatrician, a neuropsychologist, a pediatric team or other specialists. It may also involve specialists such as speech/language pathologists, audiologists, neurologists, and occupational therapists.

For instance, there's an ADHD/ADD clinic at a hospital in my area. A nurse from the team does the initial appointment with the parents only and from there assessment forms are sent out and it's decided what specialists (including a medical doctor) should be included on the team and appointments are scheduled with the various areas. When all the data is gathered and the reports are written, the parents and possibly the child meet for a final meeting to go over results and recommendations. They do a superb job--including referring out if needed--and I wouldn't hesitate to recommend them even if the child isn't a cut and dry case of ADHD.

Part of my problem with "labels" is not just some philosophical objection but really, more to the point, that they seem to me so vague and unreliable. The human brain is clearly an extraordinarily sophisticated and complex mechanism, that we are very far from understanding completely... throwing out these diagnoses of supposedly neuro-biological disorders on the basis of a few questionnaires, for example, seems to me insulting of people's intelligence.

All human behaviors are on a spectrum, and to my way of thinking, the difference is that some behaviors cross over a line where they cause functioning problems for the individual. While some individuals may have textbook cases of Whatever, many do not. I've known of kids that have a whole bunch of autistic traits but happen to be more social...or more affectionate...or don't struggle with transitions as much as you might expect, etc. Their parents understand that the label was a tool to point them in the direction of getting help for the child.

My experience has been that reliable professionals understand that. They use what is valuable out of the label and acknowledge the child is atypical for that particular diagnosis.

So... I am heartened to learn that there may be a more reliable and solid way of going about things. If I got a diagnosis I could TRUST I would already feel happier in applying the label to my own little boy. ADHD does not seem to describe him, whereas hyperactivity does... rather than being forgetful and disordered, for example, he is highly perceptive and has a great recall of things he needs to take with him or where he has left them, for example... And there must be other children in the same boat. So it is curious to me that we haven't come up with something a bit more accurate than an ADHD catch-all... Why should not hyperactivity exist on its own, for example, presumably warranting a different treatment than inability to concentrate.
Any thoughts welcomed!

Have you seen the information on ADHD subtypes, with the one being ADHD-predominantly hyperactive-impulsive? This is the basis for making diagnoses here in the US. Do they not use the subtypes in France?
http://www.cdc.gov/ncbddd/adhd/diagnosis.html

 

[Malika]

Thank you for your comments.

I should first clear up a misunderstanding I seem to have somehow generated - autism and bipolar disorders are of course diagnosed in France and the diagnostic subsets, etc, are of course used! What is different is that medication for ADHD is not universally recommended as it seems (that is my impression - someone will correct me if I am wrong!) to be in the States and that, at least until recently, Ritalin was the only drug licensed to be prescribed for ADHD. That may have changed. I would say that these disorders generally are much less known and talked about than in the States, which in my view has advantages and disadvantages...

With respect, I don't think I am "obsessing" about labels. Another feature of life here, which again may be different chez vous, is that children with such labels on them are stigmatised - they may be helped, yes, and adults may be more understanding of their behaviour but definitely not other children... And generally I think they are the object of some "pity"... They are different, apart... It should not be so, it is not good that it is so, but it is... And that is my concern about the label - for my son, not for me. If I'm honest, yes of course I would rather he could get through school without having to be constantly referred to and treated as "different" from the rest...

As for my confusion... you have to understand that I have presently received two psychologists' opinions that he probably does not have ADHD, one psychologist's opinion that he probably does and countless lay/teachers/friends opinions, all differing, on the matter... I venture to suggest that anyone would be confused!

 

[HaoZi]

It's not so much that children stigmatize them more, it's that they tend to be more open about it than adults. And yes, I understand that fear.
In the meantime, you might want to grab some books on gifted kids to help you, too. And if you can find it, some after school activity that can help him burn off some of that extra energy before he comes home.

 

[Malika]

HaoZi, thanks for understanding!

It is nice of you to imagine it but I honestly don't think my little boy is gifted... but there again we are into the minefield of defining intelligence and all the different kinds of intelligence... He is and always has been very perceptive (some people say this is a feature of what is termed "constitutional hyperactivity", ie a hyperactivity that is passed down genetically and that goes back to the dawn of mankind when males had to be ever-vigilant for passing danger and to hunt effectively....) and seems to have a bright mind in some ways, but in others seems to be lagging developmentally... He speaks two (and a quarter, really, with Arabic) languages just through circumstances, through being put in these language contexts, not because he has somehow taught himself or something!

But, then, we are all gifted in our own ways of course...

 

[HaoZi]

You might be surprised just how much he sounds like a gifted kid from what you've said here. Yes, there are different kinds of intelligence. And sometimes gifted kids act out when they're not challenged enough. Sometimes they simply have so many things running through their brain at the same time that "bouncing off the walls" is the way to get some "mental quiet". I say this not from books, but my own personal experience as someone gifted and also from raising my own gifted (though obviously troubled) kiddo. And he sounds a LOT like the gifted boys I recall from my gifted program when I was young. And trust me on this, we're plenty capable of being really stupid in some areas and really brilliant in others. Some is natural inclinations, some is learned or applied. But I think you'll find it worth looking into how gifted kids "tick" even if you keep the information to yourself.

To this day, I absolutely, positively, do NOT understand "normal" people. Their actions, motives, etc., make zip sense to me. I still refer to most of them as "sheep" unless I get to know them as an individual and they show a willingness to question instead of blindly being led. And before you ask, no, I don't consider anyone here a "sheep" because if you're here it's because you ARE questioning things and not being led along by someone simply because they have a few extra letters behind their name. And my "sheep" label doesn't apply to people that are not capable of such questioning for any reason, it applies to people who have the capacity to think for themselves but let others do the thinking for them.

 

[ThreeShadows]

Malika, his classmates don't have to know about his diagnoses.

When I was a kid there was a uniformity among the French. I thought that the arrival of Viet-namese, as well as Africans of all groups had changed the face of French society. In the ten years I lived there, I knew only one child who was "the product of divorce". She really stood out and all her behavioral problems were automatically blamed on the divorce. I can't imagine that things haven't changed for the better. Won't his teachers respect your wishes concerning confidentiality?

 

[Malika]

Ummm.... I am not making things up about the society we live in! There is still unformity among the French. I'm afraid French society has not been transformed since you lived here.... It is also human nature to isolate and judge what is "different". We live in a village of 500 inhabitants and there are a total of 19 children in my son's school. People here, like villagers everywhere, love to discuss and gossip other their fellows... There would be no possibility of "hiding" a diagnosis. In any case, I would not seek to do so, as if I was ashamed of my son or who he is... My concern is getting an accurate diagnosis so that he is not unfairly saddled with a label he does not need to wear.
There is also the element to which the label creates the reality... We came to live in France when my son was 3 years old. He had previously been seen, a few times, by psychologists in Marrakesh for "hyperactivity". When he started at the village school I said nothing to the teachers or anyone about him being suspected of being hyperactive. I wanted to see how things evolved and unfolded for him without putting this "etiquette" on him... And, sure enough, he is just seen as a rather turbulent little boy, like other turbulent little boys the teacher has known... A medical doctor came to give a routine visit to all the children, interviewing all the four year olds and "testing" them for various skills to see if they are developing normally... She noticed that my son moves all the time and recommended we see a psychologist because of it... So the school now know about the possible hyperactivity though the teacher is very supportive of me and says she wouldn't trust the almost-diagnosis we have now been given of ADHD without seeking a second opinion. Which is what we are now doing...
There is something about the label of ADHD that seems suspect to me. It has been pointed out that hyperactivity used to be a separate diagnosis but was then subsumed into a diagnosis of Attention Deficit Hyperactivity Disorder. What sense DOES this make if a child does not have an attention deficit, even if you then make a subtype of "predominantly hyperactive"?
I honestly would prefer for my son to be taken as he is, with excessive energy and constantly moving, withouth having to put the ADHD label on him. But it is others, and society, that tend in that direction. I obviously cannot resist it single-handedly...

 

[HaoZi]

Have you asked the docs about the allergy test yet?

 

[BusynMember]

That's interesting about France! I always thought Europeans were more tolerant than here, but there is no uniformity here. People are different..there is judging, but not as much since we are so diverse.

Where did you adopt him from? I ask because I have four adopted kids (two from the US and one with special needs (autistic spessctrum disorder), one from Korea and one from Hong Kong. Certain countries are known for certain disorders...example: Kids adopted in Russia have a high rate of fetal alcohol problems. Kids adopted from India were often premature and there is a high rate of cerebal palsey. Kids adopted in the US, like my son, are often drug/alcohol exposed in utero and have issues due to that...like my son. We adopted him knowing he was different...and he has done well, but has had interventions since birth. He was VERY hyperactive when he was young, but that has changed. by the way, that is not really a big deal here. People accept those who are different if they are not behavior problems (my son isn't). Now behavior problems tend to be judged, like all over. "It has to be the parents." It usually isn't the paernts, but difficult children are judged. Rebellious teens are judged. But if a c hild has a form of autism people generally tend to be far more tolerant of "different" behaviors. And there is a lot of help.

I think testing for allergies is a good thing. Every little bit helps. I also doubt it's the whole big picture. You aren't telling us much about his history so it's hard to give any solid advice. You may want to do a signature like I did below. Was he exposed to substances in utero? Is he from another country? In the US, adoptions from Ethiopia, Russia, Korea, China, Inda etc. are common place and I'm in a big parent group...have been for over twenty years. I think I've head it all. Adopted kids tend to have a much higher rate of issues than biological children. They bring their baggage with them...their genetics. There is not only the fact that often the prenatal care was not good and that the biological parents often had mental health issues, but because adoption itself is often an issue. My bright fourteen year old daughter, who I am very close to, had a period of time when she was angry at her biol. mom for leaving her. She told me "Being adopted is a special need!" I know her birthmother and was able to get in touch with her and it turned out really well, but the kids do tend to wonder "Why was I given away? Who do I look like? Why am I good in sports or do I struggle in math?" I'm on my fourth adopted child and have also done some foster care.

One last thing: In the US adopted kids are thought of as different. I can't tell you how many times I've heard, "Where is her REAL mother?" Or "You're a saint to adopt THESE children." Um, no. I adopted them to enlarge our family and THESE children needed homes. So we needed each other. Did you adopt your child as an infant? A turbulent infancy and toddlerhood can cause attachment issues that look a lot like ADHD and ODD.

 

[ThreeShadows]

Wow, Malika! When you said a village, you REALLY meant it! Five hundred people, a class consisting of 19 pupils? Am I right to assume that a majority of the villagers have been there for generations? I'm starting to understand your fear of labels. You and your son already stand out. You are not a native of the country, you seem to be without family support, raising a son who perhaps looks Maghrebian (my assumption). Right there, you have three labels!

I lived 23 years in a small town in Maine. My husband lured me there by telling me I would meet a lot of francos of Québecois origin, lol! We were never accepted by the "natives" because our people had not been there for generations. Everybody knew our business. So, yes, I'm starting to understand your reluctance.

Any chance you could move to a larger, more diverse community?

 

[Malika]

Thank you for your thoughts. Yes, Midwest Mom, I do agree there is a strong "extra" factor involved with adopted children, inevitably... and I have read (oh the joys and perils of reading!!) that adopted children can "mimic" hyperactivity as an expression of their woundedness without being actually ADHD (to use the dreaded acronym once more ) Certainly this was the opinion of the first psychologist we saw... The reason I haven't said anything about his history is because unfortunately I know absolutely nothing about it... I was married to a Moroccan, lived in Morocco and when it transpired I could not have children we adopted a Moroccan baby together (though it was always more my "project" than my ex-husband's...) In the typical scenario, J's birth mother went to a public hospital at the very last moment, gave birth to him and then "abandoned" him the following day, leaving no details about herself... He was tiny and underweight when I first met him, at one week old (and at three months he came to live with us). Morocco is of course a Muslim society in which there is the socially accepted "face" and what happens behind closed doors: sex outside marriage is illegal, and of course happens all the time... but it is a society in which there is no place for illegitimate children, a cause of tremendous "shame" and dishonour to the family... a handful of unmarried women are courageous enough to keep their babies in the face of family and societal rejection and condemnation and the majority do what my son's birth mother did...
In Morocco, the only women who drink alcohol or smoke are prostitutes or upper class women... there is simply no possibility that his birth mother was the latter, but a definite possibility that she was the former. Or she could just be one of the unfortunate women who was seduced and abandoned by a man, in the sorry tale that has travelled through time and across cultures... So she might have drunk during her pregnancy or taken drugs, I simply cannot know. Above and beyond this, I've noticed that Moroccan boys generally really are more aggressive and turbulent than in Europe... whether this is due to genes or environment I cannot know (one of my Moroccan ex-sister in laws; to whom we remain close, reckons it is in the genes!) In addition, my little boy has experienced the divorce of his adoptive parents and has moved around in his short life between Morocco, the UK and France... so there are other factors in the mix. Generally speaking I don't think he suffers particularly from attachment problems - he is very tactile and affectionate, loves hugs and kisses and tells me once or twice a day, spontaneously, "I love you, Mummy") His aggression does worry me though and seems to come so inappropriately from this normally sweet, very endearing little boy - if I speak to him in an abrupt, commanding or cold tone of voice he is liable to respond by speaking really disrespectfully, putting his tongue out, or threatening me with a stick, or even headbutting me. It seems ugly, inappropriate behaviour and however much I talk to him about it afterwards, he does not (cannot?) stop doing it... He is very emotionally sensitive and generally speaking behaving towards him lovingly and respectfully guarantees that he will be compliant and "normal"... but in a sense life of course is not going always to respond to him like that...
To be honest I read the posts here for the older children and I think "oh my god, oh my god..." not in any judging, condemning way - I feel nothing but compassion for both parents and children in these troubled, violent, hostile scenarios, but I feel terrified of my son going this way... when there is so much else going on for him, so much other potential that I see... I am sure that every parent of a young child with difficulties feels this way.
As for the village - it's a funny thing, but it really isn't the narrow minded, insular place one might imagine! People here are, by and large, incredibly open, friendly and welcoming - and it's sincere, not just surface stuff (though the gossip mill still turns, of course...) Not all the villages round here are like that, and one of my theories about it is because we are in an exceptionally beautiful site and I wonder whether living all their lives amid such scenery has made people kinder and gentler in spirit... whatever the cause, I and my son have met with almost nothing but friendliness since we arrived. As for the school, it really is so perfect for J and is why I bought the house here... Here his "difference" can be assimilated and accepted - as his teacher said, in a normal class of 30 kids, he would be constantly being scolded and labelled a troublemaker, etc, whereas she just accepts him as he is and they have time for all the children in their uniqueness. Small is definitely beautiful in the educational context as far as I'm concerned

 

[HaoZi]

It sounds like a pretty good little village for you two, can't argue that. And it does sound like frustration triggering him, which brings us back 'round to The Explosive Child. Have you kept a diary of incidents and what goes on before them? Was he already frustrated from something else earlier, anxious about something coming up, ate this that or the other? Look for patterns or anything you can think of, and watch him for small signs of beginning stages of frustration before he has a meltdown, this will help you head him off at the pass.
With my Kiddo I have to watch/listen for certain things, and I'm sure there are more than I see, but she'll start chewing on her nails or fingers, her tone will change, she'll smile less, her movements become more clumsy (not always easy to tell that one, we're both klutzes), and the cat will make himself scarce.

 

[Malika]

I seem to keep ignoring your point about allergies, HaoZi! Not intentional but I guess I haven't really considered this angle seriously. I guess it would be good to rule it out though by knowing for sure... I definitely try to avoid giving my son the "E numbers" and things like Coke - how much longer can I hold out on that one? - and doubtless a healthy diet based on fresh produce is best for ALL kids... Again, modern life rather militates against that!
Thanks for your pointers about frustration. There is honestly nothing that "leads up" to these outbursts other than that he really HATES to be told what to do in a commanding, peremptory kind of way... Yesterday for example... We went to a playground (do you call them that in the States?) where J hooked up with a little boy his age to play with. It was next to a grass area where older boys were playing football and at one point the two of them were really getting in the way of these boys and their game, stealing the ball from them (amid much giggling), etc. So I went over and told J - in no uncertain terms - to come away and leave them alone. What "The Explosive Child" calls "Plan A" and it simply never works with him. He ignored me totally and refused to come and when I insisted, knowing it would go nowhere good, he started shouting, trying to hit me, behaving monstrously...
It all looks like ODD - except that I fear that label EVEN more than the ADHD one!! I really do prefer to think of it in terms of, unfortunately or fortunately, these kids have to be handled differently. I would love to be able, in some circumstances, to order him to do something and he just obeys... It never works. So it is time to use other skilful means.... Something like "softly, softly, catchee monkey". In this same playground a few weeks ago, J was playing a very rumbunctious game of cops and robbers (which involved them killing each other every few seconds) with a group of children - at one point he pushed over a little girl who was trying to join in the game. Her mother went over to talk to J, very skilfully I thought: she asked how old he was and then explained to him, crouching down and talking on his level, that he was 4 and the little girl was only 2 so she was too little for the rough stuff. From then on he behaved beautifully with her, being very careful to avoid touching her. If someone had gone up and been angry with him, it would not have had this success...
I often seem to be asking myself these days... Do I want power in my house or do I want peace and harmony? I definitely want the latter more... And I should hasten to point out that it does NOT mean I give in to my son to all he wants for the sake of peace. We have rules and we have boundaries. But I am just increasingly flexible in the way I enforce the rules... And I don't punish other than scolding him when he has transgressed the boundary. I am afraid, from much bitter experience, time-outs simply do not work with him AT ALL... To my shame I have occasionally given him a slap in the heat of the moment but of course that is not a good idea either and it does not happen any more...
Over the past few weeks, since I read "The Explosive Child" and since I have stopped getting angry and irritated with my son for his difficult behaviour, he has been much more pleasant to be with and much "easier". Sometimes just recently I have said to myself "Well, I don't like it when people speak to me angrily or harshly, why should a child be any different?" Especially these very volatile children...

 

[nvts]

Hey Malika! I know that you're going crazy with trying to figure all of this stuff out, but with my son (difficult child 1) and his aspergers, he considers people to be people, so therefore it doesn't matter WHO you are or how old you are, he's the same status as you. So if you're not speaking with him respectfully, why should he respect you? I have to tell you, he drives most adults absolutely NUTS with this mentality - it's the social skills issues with which we suffer the most problems.

Just a thought - there may be some tips or pointers out there within the Aspergers Community that may help you with the parenting adjustments that you're trying!

Hope this helps!

Beth

 

[Malika]

Thanks Beth. Well, I guess as a general rule it IS good for adults to speak to children respectfully anyway But I take the point... I know I seem to keep resisting these suggestions but I honestly don't think my son has any form of autism. But he DOES have some social difficulties, which makes my heart bleed for him sometimes because he is a very social little chap who longs to engage with people. He is just too exuberant a lot of the time and does not understand about waiting and listening (yet)...
He also does respect SOME adults and would never talk to his teacher, I think, the way he talks to me... Funny, isn't it? I've read this is common among children with ODD - although at present I am trying to avoid that acronym!! Explosive is better, I think, and gives me some ways of dealing with it...

 

[nvts]

Oh, I'm not saying that autism/aspergers is his issue, I'm just saying that some of the kids on the spectrum have these issues and some of the parenting tips on the various websites might prove to be something that might help your little guy. Social difficulties are very common for aspies, so that's why I thought that there might be some hints on how to help him through it. I tend to view ODD as more of a symptom of a different issue as opposed to a freestanding diagnosis for most kids.

He really sounds like a sweet little guy that just wants a friend to accept him!

Beth