Aspies For Freedom

If your son doesn't need any special services, or have issues with hypersensitivity or other special needs, then essentially not much needs to be done with the diagnosis. Regardless of whether he has Aspergers or not, the best way to help him with his classmates is to ask him what's going on, and go from there - find out if he has problems with particular classmates, if he prefers time alone, if he has any interests that he shares with other kids, etc.

Perhaps the best way to deal with your wife is to keep the diagnosis as a question-mark - wait until you feel he's old enough to read up and decide for himself (perhaps around 14-15?), and then introduce him to the possibility. For myself, the main use I received from the diagnosis was in understanding how my mind works, and as a way of finding people similar to myself. I probably wouldn't have benefited much from intervention from a young age.

Just as an aside note, it's probably not the best site to use the word "sick" in relation to Aspergers - the main reason behind this site is to celebrate the advantages of Autism and Aspergers. Both the Autistic and Neurotypical neurotypes have advantages and disadvantages. I know that you were quoting your wife here, but even so...

I agree completely - he may not need special attention at all. Even if it turns out that he is Aspie, there are only certain traits that require special attention, and not all Aspies have them. Basically what I was saying is that regardless of his diagnosis, special attention while he's this young probably isn't a good thing.

That sounds a lot harder to deal with - My mother was a bit the same, and it really didn't help matters much. I can't really offer too much advise here, except to state the obvious - it sounds like the issue is to do with your wife not coping, rather than which diagnosis Thomas has.

What sorts of things does she have trouble with?

No probs at all - I mostly just wanted to say that because it sounded like you were fairly new to the concept.

It's a good attitude to have...

She's a control freak. I will admit that she has loosened up during the years, especially after the birth of Thomas, but IMO she has a long way to go.
She has an inferiority complex, which manifests itself in her need to take charge and decide. E.g. she does not want pets, therefore we cannot have pets. No regards for the feelings of me or Thomas.
There are other traits as well, but they are more of a personal nature.

No probs at all - I mostly just wanted to say that because it sounded like you were fairly new to the concept.

Thanks for not making me feel a fool. I am new to the forum, and new to talking about this.

Have you considered family therapy? It sounds as if you're having problems with the person your wife is, and I assume she can't really help who she is no more than your son can help who he is. If you are having problems communicating with her (you want a pet but she refuses), an objective therapist might be able to help. Perhaps your wife does all or most of the work around the house, and she knows she would be the one taking care of the pet. Since she's already overwhelmed (does she do most of the childcare, or is it 50/50?), maybe she needs a little more understanding and a little less name-calling and blaming? I'm not trying to attack you, but I sense a fair amount of rage toward your wife and that's going to be counterproductive as you try to help Thomas.

I also notice that you are making excuses for Thomas because you are resistant to his having a diagnosis of any kind of "problem." This is normal--we all think our kids are great and how dare a doctor try to say there's something "wrong"! But I do think it is unusual that an 8-year-old can't stand on one foot, for example. What is a "flat foot" and how does that affect his balance?

You have not provided much info about Thomas prior to kindergarten. Did he ever have any issues with socialization before you moved, or was he very carefree socially (had friends, made good eye contact, liked to play game with peers, etc.)? If you never noticed anything about him that seemed "different" from other kids his age and Thomas didn't have problems until the move, I find it hard to believe he has AS. But you also may be in denial because you do not want to face a reality you don't like. I am in the same boat with my son. I am afraid to get a diagnosis because I don't want him saddled with a "syndrome" when he may just be...different. It might help you to read this from Simon Baron-Cohen: http://www.geocities.com/CapitolHill/713...bility.htm If your son does have AS, it's not the end of the world. In fact, some people are quite proud to have it! If you truly think he does not, I would get a second opinion. Get a reference for someone who is qualified to work with children. Don't tell Thomas anything about him acting "weirdly," just tell him the doctor is going to give him some interesting tests that he needs for school purposes. You do not need to make a big deal of it. I don't see how your wife's behavior will influence the psychologist (??), because I assume she will not be sitting in on the tests.

Just out of curiosity, whereabouts are you? Here in Australia, the diagnosis is barely known, let alone leading to placing people in sheltered housing, etc...

I can understand how that would be difficult - people with low self-esteem can often be quite draining.

I was more wondering about what sorts of things she has trouble with in regards to Thomas - There must be some reason that she's insisting that she needs more outside help, and if these things could be looked at in some way, it might be a good way of leaving the diagnosis by the wayside...

What is DK? Denmark? Here in the US I don't think the schools can see medical records. I believe they're even sealed in courts of law unless very critical to a case.

I think the only way for you to proceed is to do some research and find a professional whose opinion you agree to accept. You can ask that professional what the best way would be to explain the testing to your son. You are afraid your son will be influenced to act autistic as a result of suggestion or input from your wife, and I don't know what to tell you about that. If you think your wife really is that destructive and irrational, I would echo what someone else said and consider a divorce. If, in fact, you receive another diagnosis that says your son is 100% "normal" and you can prove to the court that your wife was forcing your son to be regarded as autistic, I assume you would have a chance at full custody of Thomas.

But what do the teachers say? Your son is 8, so by now he should also be able to express himself about all this. His teachers should be able to tell you how he fits in and achieves in school. If you think your wife, your sister, the doctors, the government, the teachers, and the school system are secretly plotting to brand your son as AS even though he is "normal," I would suggest that the problem may well be with you. That's a pretty big conspiracy!

If getting an AS diagnosis in DK (?) means having to live in a "protected environment," may I suggest moving to a different country? If Thomas has no problems whatsoever, as you say, and the government will still force him into assisted living or an institution, I'd be very afraid of that government!

Here it be:

http://www.inlv.demon.nl/irc.asperger/dsmasp.html

I always thought the descriptions were pretty vague, though...

I have tried to "score" Thomas according to criteria below.
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
A. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction At age 5-6 app. he did make faces when he hit rock bottom. That has ceased. Non of the other things mentioned have ever applied
B. failure to develop peer relationships appropriate to developmental level Thoamas has friends. He has trouble making new friends but he is functioning fairly good in groups where he knows the others (Dad's point of view, of course I would love for him to be able to make loads of good friends all the time ).
C. a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people) At present he keeps talking about World of Warcraft. We caved in about a month ago and accepted that he play it, so it's pretty new to him.
D. lack of social or emotional reciprocity I am not quite sure what is meant by this?

2. Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
A. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus He liked dinosaurs a lot a couple of years ago. Now there is no specific area of interest. Playing games on the computer, but he is fine with the restricted amount of time that he gets to play.
B. apparently inflexible adherence to specific, nonfunctional routines or rituals Nope
C. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) Nope
D. persistent preoccupation with parts of objects Nope

3. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years) He is, and has always been, very talkative.
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood. Nope
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia." He is definitely not Schizophrenic but what is PDD?

You are certain your son's diagnosis is wrong, but then you keep saying you don't know anything about the spectrum. It's very easy to learn what PDD is on the internet. It's probably best to learn as much as you can before making an armchair diagnosis (or undiagnosis!) of someone. If your son has no problems and is perfectly "normal" in every way, has friends, no developmental delays, etc., then I'm not sure why you are posting here. The doctor was obviously completely wrong, your wife is a nut, and your country is too authoritarian. I would get a lawyer and take on the diagnosis, your wife, and whatever country you're in that wants to institutionalize your perfectly average son.

Hi Thomas' Dad,
Interestingly, my husband felt the same way about me-as you do towards your wife ( and to a lesser degree, your sister). He blamed me for causing our son's 'problems'  He said that if I were better organized, quit arguing so much ( with him) then our son would be fine.
He said "Boys will be boys. He is just a late bloomer. All children act this way sometimes. You're spoiling him. You don't pay enough attention to what is important.. If you were just a better wife, mother. ETC"
 I finally got our son diagnosed so that he could have a bit of help in school. I 'knew' he was on the spectrum, anyway. I did go against my husbands wishes,   er.. not the first ( or last) time
and it caused a bit o'trouble in our rather rocky-at-the-time marriage. ( also not the cause)
Denial is a powerful defense against powerful emotions. My husband took a long time to come to terms with the fact that his only son would have some difficulties growing up. Who doesn't?
So, here we are 9 years later. All Still together, btw. ( amazing!)
  My son is still on the spectrum, I am still the same funny, disorganized, off-beat Mom. We have great times, my son and I. My husband is also a 'good' dad-they do lots of things together. I have had to let go a bit and let my husband parent our son in his way. It isn't my way. My husband is more accepting of both of us.
I am not saying you are in denial. I am not saying that Thomas has AS.
But if he does, so what? He is still the son you know, and love. A diagnosis will not really change the fact that Thomas needs parents who can work together to support him, no matter what.
I think a second opinion would benefit YOU a lot. GOOD LUCK!

Thank you all for your input. They are truly appreciated. There is no doubt that it is a sore point that a lot you are touching upon. Does he have it? Am I in denial? Can I just not see it? I have been pondering those, believe me.

I believe that the questions and remarks have been well deserved and sincere. However, I think that we have diverted from my original point, and I would like to revert to that: How do I go about it when I want to have a reassessment? How do I tell Thomas why he has to submit to these tests?

I think this was explained above. Do research in your area and find a specialist you decide you will trust, and whose evaluation results you will accept. Ask that doctor what you should tell your son about the upcoming tests. I would first do a lot of reading about AS to familiarize yourself with the syndrome. This will prepare you to explain to the specialist why you believe your son does not meet the criteria for placement on the autism spectrum. I would also suggest bringing a note from your son's GP explaining that he cannot be expected to stand on one foot because he has "splayfoot."

I apologize if this isn't the information you want. This is actually a forum for people who have AS, and most of the people here are rather proud of the fact that they do. Since your son has absolutely no symptoms of AS, it appears he is being railroaded by mental health professionals, your wife, and the school. If that's really the case, you really do need to get a lawyer.

I tend to be a somewhat blunt but bear with me.

If you truly believe that there is nothing "wrong" then why would you seek affirmation of something that we can't see ie. second person accounts stating opinion that all is well.

Second of all, there is no exact proof that poor social skills, eccentric interests, or other atypical workings of the mind are indeed, sickness. They could be signs of genius, or they could be simply signs of perceptible differences that have been collectively referred to only recently as "Asperger's Syndrome". In that sense, there is no sickness to be found at all.

He reacted very strongly to the situation with a lot of crying, and rage. Rage generates rage and we did not handle this period very well to say the least.

There is a certain amount of evidence that some autistic range behaviours overlap with some bipolar phenomena, though it is not meant to say that your son is in any way detached from reality. It's possible that he may exhibit varying levels of energy and attentiveness, he may sometimes think at a quicker rate than those around him causing boredom, and that the sum total of these affects, along with some clumsiness, may make him stand out.

The first position assumes that you can read minds, and the second position shows a projection of fear or hostility toward the testing staff, while the third is your assessment that the tests are "stupid".

Not to worry. a) Asperger's is not a diagnosis that is recognised for treatment purposes in the medical system. I doubt that any clinic would see cases for Asperger's unless the medical system treats it in the U.K.  b) Tracking of students is against the law under the American's with disabilities act, if you choose to even call it a disability. c) You and your son can walk out there in front of God and everyone and safely say that there is nothing wrong since there is no treatable illness.

In my own case low doses of epilepsy medication have helped. All in all I do pretty well and have even held a position in government.

Naw, probably not. Yet, there are some 'eccentricities' that have caused you and your son some difficulties. In my own case I reckon that my entire family is somewhat like me, and so noone really ever noticed at that age. In addition, I presented no behavioural problems and just very quietly attended school. I stuck to the same routine day in and day out with little variance. I did, however, have trouble making friends and not the least interest in group activities, sports, etc. which doesn't make one very popular as a child.

I apologise for having been such an authoritarian the other evening, since I really didn't know that you had read the file. I can only imagine the kind of nonsense and gibberish must be in there.

Though these things may also be fustrating, particularly considering your frame of mind having read the "psychology report", the tests conducted were to look for specific behaviours that have been labeled as AS. For example children exhibiting the behaviours that have been stereotyped as asperger's syndrome will often have difficulty with imaginative playinvolving inanimate objects, or will walk lightly upon their tip-toes or edges of their feet, or will expound for hours about flora and fauna {at the age of 5} and yet know little to nothing at all about 'ordinary subjects'. There may also be problems with over-attention {fixation}, or inattention.

You're right. I would think that this procedure was far too structured and formalised to get a spontaneous response, though, these two may have been instructed to 'measure something'.

Anyone can become jaded with the practise of psychology in its current, purile state. The entire process only serves to label the patient, collect fees on the service, possibly discuss the labeling, and then send the "patient" to the psychiatrist.

Well, it's a new diagnosis, meaning that there is no treatment for it that is commonly accepted, and no insurance covers it per se.

Some therapy may help, though with an aspie it may like leading the proverbial horse to water, or like herding cats.

Some medications may help with side issues though I have a word of caution.

I met someone some months back who stated that her offspring had Asperger's syndrome. He/she had been given a medication in the anti-psychotic class, though she was quite unaware of anything other than the name of the med.

She stated that she thought meds really weren't the right answer and that he/she was never psychotic. She also stated that until he/she was 18 it was her business in that it made her life so much more livable.

Noone really knows if that treatment is hazardous to the growing brain, just how much memory loss it causes, etc.

It's great that you're going to be able to have control over your own medication soon, and if you don't identify with the Aspergers label, I agree that you absolutely should not have it - After being diagnosed myself, I found an incredible connection with many facets of the experiences of others with Aspergers. If you didn't find this connection yourself, you probably aren't Aspie.

As far as anti-depressants go, keep in mind that it may be a case of demanding that the psychiatrist give you a program of gradual dose reduction, rather than just trying to convince him that you no longer need them. Some psychiatrists are great, but some just don't listen, or believe too strongly in medication.

As far as having the label goes, in terms of my experiences, the reason I don't just label myself an individual is that people would listen, agree that I'm an individual, and then ignore anything individual about me. For example, they would continue to assume that I enjoy small talk, that being tapped on the back unexpectedly just "makes me jump" rather than being a deeply unpleasant experience, that I "Should get out more", etc. Also, I actually am genuinely proud to be Aspie - for myself I believe it has given me many more advantages than disadvantages. Another advantage is that having the label allows me to find other people similar to myself, which makes a huge difference in my enjoyment of life.

In addition, labels are inevitable. If I didn't have the Aspergers label, I'd be given others, like "antisocial", "unfriendly", "lacking self-confidence" (which I don't - I'm actually quite egotistic, really), etc.

I suspect that the main reason you find it disturbing when others say that they're proud to be Aspie is that you're trying to move away from the word yourself. My advice is to remember that you have the choice to identify as NT, regardless of anything your psychiatrist or your parents may say...