Need some help and guidance with NOT being diagnosed with Autism.

Hi Songwriter,

We have two problems in this discussion.

Firstly, autism is a very difficult concept to discuss because it is so intangible, invisible and alien to everyman's common experience. My concept of what a "thing" is may be different to yours and our experiences are different. My concept of a thing is just something that provides a useful label that enables people to provide help for others who are suffering. (I'm aware that some people violently object to use of words like sufferers in association with autism but I personally am suffering because I have it). There is an underlying problem with communication and imagination that autism gives us alongside all of the other tics, foibles and traits that come along for the ride. If you spot the pattern of traits then it tends to suggest that you have the underlying diagnosable issues. I suspect that the OP's child has the underlying issues but the OP, reasonably, struggles with the logical step from "has traits" to "has autism". The traits can be an indicator that suggest due investigation and that is what might benefit the child.

The second is that we are systematically not good at explaining ourselves and negotiating and seeing other people's point of view. This leads to frequent violent disagreements on this forum and I absolutely don't want you to feel antagonised or alienated by what I have said.

We are all struggling with working out how to deal with it but I hope the OP (and us two too) are learning as we go.

It sounds like I'm not explaining myself very well, so I'll leave it at that and hope that Blu takes from it what I intended.

Hi songwriter,

I have no problem with the statement "He/she has the traits and symptoms associated with autism, but doesn't have autism". I have a diagnosis so I "have clinically diagnosable autism" i.e. the triad of impairments to the extent that a specialist can recognise the condition in me and give me a diagnosis that gives me the protection of the equality act and other measures. I self-diagnosed to begin with but needed an official diagnosis as I was continually encountering confrontations and arguments at work. This is an emotive issue and people have different concepts of what autism means to them. I don't know if you would get a diagnosis or not but I have no issue with us both being on the spectrum and both having similar traits as it is a spectrum and varied thing. hence "If you have met one person with autism then you have met one person with autism".

recombinantsocks, sorry, I don't think I explained what I was saying very well. I meant that autism isn't a 'thing' in that there is no sensible reason for the statement:

"He/she has the traits and symptoms associated with autism, but doesn't have autism".

As in, it isn't a 'thing' in its own right - it is a name for those experiences and traits., which I believe is the same as what you're saying ('a standardised set of criteria').

Blu74 sounded as if she was arguing that 'some people have autism, but some people just have the traits and don't actually have the autism' as though they were two entirely different things. Which is the mistake I used to make, looking down a list of the list of signs of autism: "Well, I have so many of these...but I don't have autism because I'm so 'normal' and people with autism have an actual, real condition whereas I'm just me". It took me a very long time to appreciate that autism isn't something obscure that only happens to other people and couldn't possibly be me - if I was checking off the traits associate with autism, all that was in it was the name or label.

Certainly you can have some of the traits without meeting the criteria in full, but when you're checking off a long list of them for your child but then arguing that your child doesn't have autism and just has all of those traits, perhaps it's time to stop seeing autism as a 'thing' beyond those traits and accept that autism IS those traits.

Blu74,

Please don't waste your money on lawyers. The only people to benefit from that are the lawyers. It will cost you lots and it will cost the education authorites lots. You will be poorer and taxes will rise or kids' education will suffer.

Songwriter: I disagree with the idea that autism isn't a thing. It is as real a thing as blindness or deafness. it leads to very specific difficulties in everyday life. There is no machine or chemical test that can identify it but there is no physical test for other psychological conditions. The difficulty in diagnosing it, or in people recognising it, does not mean that it does not exist. The only option is to have a standardised set of criteria that are evaluated by experts. The DSM is by no means perfect but it is a million times better than the situation when autistic people were condemned to having no help with their problems.

NAS6505 said:

teachers, people in mental health and GPs for what to look for, they use this single list of symptoms, if the same scenario played out 30 yrs ago the teacher wouldn't bat an eye, today the DSM tells them what to think, the DSM tells them what is considered odd or strange or in their words "atypical".  Atypical to them, and I do not quote,  walking with an odd gait, moving their arms in a strange way,  shyness, daydreaming, problems focusing, high interest in a partucular subject matter, etc are all signs to look out for, they all mean a disorder is present.  Carrying around a blanket or pillow is ok, but anything else is not ok, having a heavy interest in friends is ok but a heavy interest in dinosaurs or trains is not ok.

If I can jump in?

I am no expert. Not by a long shot. I also don't know your child. But I will say that I fully understand your point of view.

I used to think that I had some traits similar to those displayed by people with autism, but I was NOT on the autism spectrum. I saw autism as a 'thing' and was so against labels that I would not have classed myself as having autism.

My opinion was strongly that "anyone who's a little bit different/unusual gets diagnosed with something", and that such a desperation for a label was absolutely ridiculous. I, too, would have thrown around words like "overdiagnosed" and "everyone wants a label".

We're now years down the line and I now label as having self-diagnosed Asperger's. What's changed? I've realised that autism isn't a thing.

You say above that "just because someone has this trait, and this trait, and this trait, they're labelled as having autism when they might not". But the point is that autism is a word that specifically covers that collection of traits. Autism isn't a 'thing' of its own - it's simply a name, a label, given to people with that selection of traits.

You're absolutely right that in the past it would have just been seen as being "a bit different" and now it's labelled as "autism", but that doesn't mean that people in the past did not have the traits associate with autism. It just means that they weren't put together under the umbrella of autism and given the name and label.

The more I have learned, the more I've discovered that in my mind there is no doubt that I'm on the autistic spectrum. Nobody would know it to look at me - some of the traits I don't have, others I hide well - and undoubtedly I just come across as a little bit different, a bit shy, a bit antisocial, a bit lazy, but the point is that the traits that cause people to see these parts of me are under the autistic spectrum and I fit very well into it. Exact things like, as you put it, "walking with an odd gait, moving arms in a strange way, shyness, daydreaming, problems focusing, high interest in a particular subject matter". Autism is just a name, a label, for those 'issues' so that people can learn to better deal with them.

Trust me, years ago I would be the first to look at a list of traits and go "I hate labels. I don't have autism, I just have...", but accepting that I do fit the autistic spectrum recently has only been a positive thing for me. It doesn't change me or any of the traits that I've always shown, it just provides me with a better understanding of myself and access to communities and information that I would otherwise not have accessed.

I do not think a diagnosis of autism is terrible, as I've stated many kids do have it and benefit from assistance or therapy, but we have to make sure they truly have it first.  Just observing and looking at what they do isn't enough as there can also be medical reasons for why they do what they do.  I'm simply advocating for dotting all I's and crossing all Ts.  Making a medical diagnosis based on what you see someone do is what was done in the dark ages before doctors knew enough and tests were available, it shouldnt be the sole single criteria for any kind of problem or disability in 2016 without exploring every possibility.  I would say the same thing for any disability or illness that is based only on observational diagnosis, not just autism, I have nothing against it but I do have something against jumping to conclusions especially when it is something that affects this child for a lifetime, not just until 12th grade. 

As for the teacher, yes I get the whole thing of where they have many kids they've seen in class and can spot out a child having difficulties.....again we have to go back to the DSM, the DSM dictates for teachers, people in mental health and GPs for what to look for, they use this single list of symptoms, if the same scenario played out 30 yrs ago the teacher wouldn't bat an eye, today the DSM tells them what to think, the DSM tells them what is considered odd or strange or in their words "atypical".  Atypical to them, and I do not quote,  walking with an odd gait, moving their arms in a strange way,  shyness, daydreaming, problems focusing, high interest in a partucular subject matter, etc are all signs to look out for, they all mean a disorder is present.  Carrying around a blanket or pillow is ok, but anything else is not ok, having a heavy interest in friends is ok but a heavy interest in dinosaurs or trains is not ok.  There are 7 pages of this.  It doesn't come down to the teacher being able to spot something it comes down to the DSM telling her what to spot, once the teacher brings this up it gets the ball rolling for an IEPa nd evaluation, parents usually get concerned to hear this and sign the papers to have an evlauation done, CARS2 of course is done, it's part of the evaluation BUT CARS2 is done only for those with high functioning autism so like I mentioned earlier the percentage of kids who come out of this evaluation deemed no disorder are very low, the CARS2 works against them, no one can ever take this test for autism and pass it with a normal score.

As for me sounding bitter, well, it's been five years of going back and forth with the school, being almost harassed with multiple phone calls and e-mails per day, yanking my son out of class to give him mass amounts of testing taht include him doing jumping jacks and balancing on one foot, one teacher who felt he had a disorder because she didn't like the way he held his scissors at 5 years old, one IEP meeting where it was suggested he had issues because he has no brothers and sisters and never attended pre school, a school who has ignored the fact that he's been physically hit by other kids and coming home with bruises yet they feel his fear of other kids touching him is from a sensory processing disorder (gee getting punched and hit in the crotch with a lunchbox might have something to do with that-where's THAT kid's IEP?), they were also told he has upper airwway obstruction with snoring arousals which cause him to be fatigued in school giving him trouble focusing which they ignored, his teacher told them he lies on the ground in class having a tantrum but when we got her into the meeting she admitted he was only lying on thr carpet in the reading area reading a magazine, she told them he spit on other student but at the meeting admitted he wasn't. 

Today I was notified of my legal rights and what attorneys I can use because I'm being taken to a due process hearing.  Fact is, they are not considering medical issues, in their mind the DSM rules and what the DSM says also goes.  They all use this across the country, it's the same list for everyone no matter what.  Anyone of any age is diagnosed based on this, and it is often changed and tweeked, if someone is considered to have autism 2 yrs ago the new one might then tell them they no longer have it.    I simply urge people who do their research with an open mind, look at the studies done, evaluate what medical conditions can mimic autism, look into a differential diagnosis BUT if they do not seem to have a medical issues going on them maybe they do have it.  I refuse to sit there and not question what else the problem could be and just go with the flow.  Just because they don't act like all the other kids in class does not equate to a disorder every single time.  I can't help if I sound bitter, I'm not, I'm a parent who is advocating for their child and is being almost harassed by the school to the point of being taken to court, after 5 years of this back & forth you tend to get very tired.  Especially when his every move is analyzed.  If you were able to see his IEP evaluation report and what they deemed a disorder you would see what I'm talking about. 

Of course people won't like what I say, of course it makes me sound bitter or in denial, I'm not going with the grain-that's not typical.  What also isn't typical is for a school to pick on how a child moves their feet when they walk or if their voice is high pitched-it's not my problem he hasn't hit puberty yet, he sounds nasal when he talks-because it was already determined his adenoids need to come out, they dismissed it.  It is a long tiresome ride, trust me. 

Hi Blu74,

You might be right about your child but you might be wrong.

Your 11 year experience is perhaps of one child? A teacher's experience is of many children and they can often identify a child that is struggling and they might be able to identify why a child is truggling. They have experience that you don't have. They are not infallible but neither am I and neither are you.

A diagnosis of autism is not a terrible thing, it can be the gateway to progress that a child or adult cannot make without the recognition that they are different and that there are effective ways of dealing with it.

The behaviour of a person with autism can vary massively according to the environment and may reflect a reaction to a key individual - a child may be well behaved with one teacher but totally out of control with another, normal at school or out of control at home or vice versa. The autism is constant but the behaviour can vary markedly.

Your post reads as a very angry and bitter tirade that indicates distress, a closed mind and a belief that autism is terrible. I have autism, it annoys me but it is not a catastrophe for me.

To the original poster-you are not alone.  I too am dealing with a similar issue.  My son is 10 yrs old and his school is trying to push this diagnosis on him along with what they feel is a sensory processing disorder.  Their reasons, first off, are absurd not to mention that a school can now place a medical diagnosis on kids, interesting.  When it comes to behavior we as parents know our own kids better than any doctor or school psychologist or teacher.  My son's teacher has had him for 5 months, I've had him for almost 11 years but to them that doesn't matter one bit.   Try finding something online about a parent disagreeing with an autism diagnosis and you'll hear nothing but crickets.  Almost every article is about parents pushing to get an ASD disgnosis....this alone is disturbing.  The parent is upset the kid isn't hitting their milestones like the other kids, they're not acting like their peers, they're not being cookie cutter like everyone else.  Granted there are kids who do have autism, it does exist, but there's so many that don't have it that are misdiagnosed.  As adults would we want our GP to diagnose us with an illness that we don't have and go through specific types of therapy?  General practicioners get sued for malpractice for these kinds of things.  It's an observational diagnosis, our doctor's eyes see just the same as our eyes do.

No eye contact alone doesn't mean any disorder is present, not to mention why does it have to be considered a disorder.  Children are no longer allowed to be bored or shy, they are now considered to have the disability of autism.  To understand the diagnosis you have to also understand the method that is used.  You have to understand the DSM and the CARS2 tests, among others, that are used.  The CARS2 tests is one of the most "rigged" of all the tests, not in the literal sense of course.  It consists o f 15 different types of criteria, the lowest score you can get is a 1 meaning "normal" BUT 15 criteria and a 1 for each means you'd score a 15, if you look at the legend they use, a 15 still falls under mild autism....which means we'd ALL be diagnosed with autism under this test, you can't win with it even if you consider yourself to not have autism, even if your results of a 1 for each mean normal functioning, I brought this up with the psychologist and I got a, "umm uhh gee I don't have an answer for that".  Most parents just go with it, it's the parents who are usually the ones to bring it to the attention of a dr or school, not the other way around especially when it comes to a school.  

Sometimes it depends on what kind of teacher they have. My son, according to the school, has the strangest form of autism that comes and then disappears.  According to them he had it in kindgergarten but didn't have it in 1st grade, then had it in 2nd grade just a slight but then a little in 3rd now they claim in 4th grade he has it.....Both johns hopkins and yale both agree that autism is a consistent disorder that never goes away, things can cause it to flare but all symptoms do not just disappear.  If the teacher is annoyed by their behavior he or she can turn around and bring it up and ask for an evaluation to make them stop said behavior because they just may simply be unable to handle it...in other words what the kid is doing is annoying to them, same for some parents, it's easier to just place a name on it and throw them under the bus to therapy than to actually parent the kid.  This being said, again, there are kids who do have ASD and legitimately need the help.

The biggest issue in placing that label on a chid is that it never goes away, they are stuck with it for the rest of their life, theyw ill be a child with it and then become a spouse with it etc.  all because a piece of paper that they look at says it's a possibility they have it.  If there are any issues with not responding to one's name, you must first rule out any medical problems with an ENT, is the child having problems hearing, do they have fluid in the middle ear.  There are many symptoms on the DSM that can have a differential diagnonsis of fatigue, sleep apnea, vitamin deficiency, etc.  It's important to make sure a true medical condition doesn't exist before running to autism not just for the sake of common sense but to make sure they do not have a problem in those areas that do not get addressed because autism is assumed.  A child who could greatly benefit from tubes in the ears could wind up with ear problems progressing all because mom doesn't like that she or he doesn't always look at them and they assume autism must be the reason.  

Shyness or lack of being social isn't always autism as well.  The inabiility to focus can also be traced back to lack of sleep, the average person doesn't know if they have sleep apnea or snoring arousals only someone who observes them sleeping and a sleep study at a facility can prove this, the latter things which can lead to a problem focusing, problems concentrating, etc.  This has to be ruled out.  Obstructive upper airway syndrome can also be another issue that can give someone 4 hrs of sleep when they think they're getting 8, and they will have no memory of it.  In essence everything has to be considered.

The DSM that they all use in order to diagnose is a very tricky list.  Prior to 1994 in order to have autism you only had to have 2 symptoms-low IQ and being withdrawn.  Then they came up with a list 7 pages long of every symptoms under the sun, combine this with the CARS2 and you have the perfect storm to diagnose almost anyone with ASD, the DSM is very good at analyzing and nitpicking every behavior just short of how you wipe yourself after going to the bathroom.  You only have to have what they perceive as 6 symptoms out of a billion to BAM have autism.  Is overdiagnosing going on?  A resounding yes.  Not every kids develops at the same rate as others, some kids talk later, walk later, potty train later, are more social or less social than others, etc. it doesn't always mean a disorder, everyone is unique, expecting children to be just like everyone else is unrealistic.  I'm talking the difference between spinning in a circle for an hour without the ability to stop and a kid who simply daydreams a lot in class, big difference, one may have autism, the other might just be bored.....but wait, you're not allowed to even be bored any longer, that too is a disorder.  How would we feel as adults if our boss at work said he wanted to do a psychological evaluation on you because he doesn't like the wway you move your legs when you walk or that he doesn't like the pitch of your voice that you sound to nasal, or that he doesn't like that you don't talk often enough to your co-workers or how you talk to your co-workers.  If a manager forced you to get a psyche evaluation based on the way someone walks he could be looking at some kind of lawsuit, but yet we do it to our kids.  We tell them bullying isn't good, yet it's ok if the teacchers do it to them.  If a peer told one of our kids they didn't like the way they walk, talk or act or that they act weird we'd call that bullying or being rude, but if an adult IEP team does it it's considered an evaluation-it sounds prettier, just ponder that for a moment.

I never wanted an evaluation done on my son but I figured go ahead let them do it, I knew what they were leading to and they wouldn't let up if it wasn't done, almost to the point of harassment.  Now since I disagree with the IEP I can have a due process hearing, with an attorney.  All because they don't like his handwriting which is what started this by the teacher, I can't read my doctor's handwriting but I don't feel he has autism, but if he were 40 yrs younger he'd be told he has it.

Don't stop fighting for your child, only YOU know your child's behavior, no one else.  Remember, again, they are all going by a generic national list, the DSM, which could paint everyone including our pets as having autism.  Don't back down to anyone, don't label them if you don't feel they have it.  For me my only recourse is to homeschool if I cannot afford an attorney, I'm getting very close to doinf this.  This so called epidemic is out of hand, take back your child and don't let anyone else place an observational diagnosis on them, as a parent you are also fully qualified to observe just as they are.  By someone telling you that you are wrong is not considering the parents' opinion, again remember most cases of autism are brought forth by concerns of the parent, if you haven't had any concerns then tell them to go pound salt, if you intend on keeping them in school during this be prepared to get an attorney as they can force you into a hearing, whole thing is ridiculous.  Don't let others make you feel bad by not wanting to place a label on your kid, it's considered a medical disability, it doesn't mean you have something against people with autism it means you don't want to have a diagnosis made without sufficient evidence of said illness or disability.  Stay strong and fight for your kid, don't throw them under the bus in haste, the worst thing we can do as parents is to over analyze every move they make, not eveything they do always means a disorder or something sinister.

classic codger said:

Generally speaking, when someone new comes along I try to spot them, welcome them and offer whatever I can. OK, this isn't always well received, but I can't predict how anyone might react, so I don't worry about it, and if someone gets vicious and nasty at me, I just think that they didn't read me right in the first place. If I'm happy that what I've written is in no way personal (I think that our regular readers know when I'm being personal, but never to newcomers...) then I laugh with bitter irony at the stupidity of those, I call them 'morons', who think I have been.

However, I do get upset when it happens, sometimes for days, and I wonder sometimes if it's worth me paying that price when I'm just trying to help in the best way I can. I might be crap at it, I can't tell, but considering the number of times that I've had a simple 'thank you', I don't think I can be all that bad, and it's the thought that someone feels better because of our help and support that keeps me going.

CC, in my opinion, there's little value in feeling anger or being upset - it only hurts yourself (this is the lesson I learned from being given a book an anger management). It's better to try and work out what happened and see if you can avoid or resolve the conflict next time. We are bad at communicating and seeing things from others' point of view. We are bad at identifying when we should make a diplomatic move towards reconciliation. If the other person doesn't understand what you are saying then it might be lack of imagination on either side or lack of common understanding (I think the word for this is hermeneutics) on either side. Sometimes the things we say help, and by the way your contributions really do show that you really understand the situation that we are in. Sometimes our contributions miss the mark because the other person needs more evidence or because we have the wrong end of the stick. Perhaps sometimes we really struggle to imagine how an NT person might be feeling in a situation such as this?

For the OP's benefit, we talk about NT meaning NeuroTypical which is a shorthand for non-autistic 'normal' people (actually there is as much variety amongst NT people as there is amongs autistic people but that's the subject for another thread entirely.)

Oh, I agree entirely, new people couldn't possibly know that their questions have been asked before, and answered, and debated...

I've tried reading through back threads and their posts, and there's lots of stuff there that I found valuable when I was looking for things, but I was finding it more by accident than design. Sometimes, just knowing that there is variation of opinion can be helpful when it gives me a choice of which side sounds best to me. Bob mod previously said that the way the site is used now has moved significantly away from its' initial conception and use.

That's why I thought that something like FAQs might work best - when we see a recurring theme, links to past answers, and the variety of people who posted them can, I think be comforting.

My main thought, though, was that I think that Bob mod's suggestion of a consultation that includes us is a great one, he recognises that times, and needs, are changing, the site probably needs to change too, and maybe this would be one way to avoid some of the missunderstandings about us, and the resulting conflicts.

In the case of this thread I, like R'socks, thought that things had gone pretty weird pretty quickly - I thought I'd lost the ability to read! Reading past posts was one of the things that helped me understand the way we speak, and helped me to feel comfortable with expressing myself.

I hate to think that someone who we could help might, or has, quit the site just because of these issues. I'm sure that none of us want or intend any such thing to happen. I was looking for a way to prevent our trying to help being misconstrued, as it appears to have been in this case

I like the index idea, codger, but unless such a facility is created by which newcomers can readily access the information they might want, it wouldn't be fair for anyone to feel impatient towards them for asking questions that have been asked time and time again.  I say this because I've come across this complaint before, on other forums (nothing to do with AS, more to do with mechanical stuff). The 'search' functions never seem to work very well, and unless newcomers want to spend literally hours trawling thropugh old posts (whose titles don't always indicate clearly what they are about), who can blame them for asking afresh?

I know nothing about how these forums work on a technical level, but if it is possible to create a really thorough index, it would help a lot of people I imagine.

Hi everyone, except for 4390evans to whom this entry is specificaly NOT addressed, jus in case she is staying for a little while.

I really thought that Bob mod had summed up extremely well, and that no further posts were required. I must admit that, like R'socks, I found the whole thing quite bizarre. However, I'm always open to trying to get some positives out of any situation, and I wonder if there are any lessons here that I can use.

Generally speaking, when someone new comes along I try to spot them, welcome them and offer whatever I can. OK, this isn't always well received, but I can't predict how anyone might react, so I don't worry about it, and if someone gets vicious and nasty at me, I just think that they didn't read me right in the first place. If I'm happy that what I've written is in no way personal (I think that our regular readers know when I'm being personal, but never to newcomers...) then I laugh with bitter irony at the stupidity of those, I call them 'morons', who think I have been.

However, I do get upset when it happens, sometimes for days, and I wonder sometimes if it's worth me paying that price when I'm just trying to help in the best way I can. I might be crap at it, I can't tell, but considering the number of times that I've had a simple 'thank you', I don't think I can be all that bad, and it's the thought that someone feels better because of our help and support that keeps me going.

Now, don't get me wrong when I say this, but if someone throws their toys out of the pram because they don't like it, I really, truly don't care. I've watched a few 'come and go' in this manner, and whilst I don't like the thought that someone is cutting their nose off to spite their face, I can't afford to lose any sleep over them.

Which brings me to this point. Is it that newbies don't spend time getting the flavour of the website before jumping in with both feet? It seems to me, as in the case of this thread, that those who don't, often fall foul of their own perceptions of what this website is. I see questions getting asked that have been asked, debated and answered previously. I don't mind seeing someone adding new thoughts and opinions to a previous thread, but I wonder how much time we waste in repeating answers that we've given before, or even answering people who don't, as Bob says, lknow how to hear us?

I'm still waiting for the opportunity to join in with the consultation group on developing the website, but when I do, Id like to be suggesting some kind of index, possibly on the lines of an FAQ page, that people can be easily pointed to and read for themselves. Thoughts anyone?

4390evans said:

If you still haven't seen what type of help I was asking for then I am wasting my time here, seen as I have repeated myself a few times! 

I don't really care who or what NT is.

God help if someone actually came on here and was at their wits end and desperatly needed help or a sympathetic ear! All apart from one person has in some way insulted or responded condescendingly towards me or assumed what I think! 

From what it looks like on this thread it seems a bad thing not to have Autism and that it is wished on people! I guarantee non of your parents would of wished for you to have Autism, nor you for your childeren yet when I write replies you are so quick to look into another meaning of what I write and say oooh thats a sign of Aspergers or Autism instead of just focusing on what the original post was about. 

Im very suprised Ive had this bother to be honest, and dont think I will be asking or taking part in anything else on this so called charitable site.

We don't mean to be rude but one part of autism is that we are not very diplomatic and not good at understanding other people. That is why we are here, we are generally trying to get help with the problems that autism gives us. Being sympathetic is also something we struggle with as we are fairly hopeless at judging people's emotions. This forum is definitely not teaandsympathy.com!

Your question runs against a frequent problem of parents and people with autism. It is generally very very difficult to get a diagnosis. People have to jump through all sorts of hoops and delays and trauma before they get to a diagnosis.

Most people here know that they, or a child, have autism and we generally have no choice but to accept this and make the most of it. It is not the end of the world or a terrible thing for us. It just has to be part of our lives.

We can't tell if your child has autism and with no disrespect I doubt if you can either. Autism is very difficult to diagnose and one autistic person does not resemble another one. If you know someone with autism then another person with autism may be completely different. The best people to work this out are the experts. Experts do, however, get fixed ideas sometimes and diagnosis of conditions like autism can sometimes be wrong. I think you should challenge them (politely) and ask them for details about why they think it is autism and how your child might have come to have the condition. Ask them what difference it will make to treatment. 

There are procedures for asking for second opinions in the NHS. You aren't stuck with this diagnosis and only time will tell whether the diagnosis is right. If autism is the right diagnosis then this will mean extra help from the right people. If it is the wrong diagnosis then you might find that the same people are involved in trying to help him. 

Hi 4390 Evans,

I am sorry that you feel your experience on our peer to peer community has been frustrating. I hope the experience has not been entirely without use however.

The NAS provides the infrastructure for this community and volunteer moderation. Its value lies in the members and their generosity in engaging with newcomers, and longer term members. In general and because it is anonymous the discussion is very honest and robust. But with some exceptions people are treated with real compassion.

You may not have been responded to in the way you were anticipating but it does not invalidate the opinions. Listening (in text) is hard to do but something we all try and do in the community. Tone can be disconcerting but one has to read through this to hear the communication.

NAS and the Community will be here should you want to return at any point.

Best Wishes to you and your family

Bob (Mod)

If you still haven't seen what type of help I was asking for then I am wasting my time here, seen as I have repeated myself a few times! 

I don't really care who or what NT is.

God help if someone actually came on here and was at their wits end and desperatly needed help or a sympathetic ear! All apart from one person has in some way insulted or responded condescendingly towards me or assumed what I think! 

From what it looks like on this thread it seems a bad thing not to have Autism and that it is wished on people! I guarantee non of your parents would of wished for you to have Autism, nor you for your childeren yet when I write replies you are so quick to look into another meaning of what I write and say oooh thats a sign of Aspergers or Autism instead of just focusing on what the original post was about. 

Im very suprised Ive had this bother to be honest, and dont think I will be asking or taking part in anything else on this so called charitable site.

I have been reading this thread with interest and curiosity as I am left wondering what you are doing here?

Please take on board some of the excellent advice you've been given, however I feel that this will not be the case.

You are terrified of a mis-diagnosis, understandably, but it appears to me this is only because it doesn't agree with your opinion. You don't want your daughter to have a label, but you do want her to be assessed, therefore she will get a diagnosis and a label (which you don't want her to have!) I'm very confused and I'm NT!!!!

My suggestion would be to follow your own counsel. You've asked people for help and don't understand some of the answers you've had, these answer have been given by people who have the adorable trait of honesty, which is often mis-interpreted as rudeness.

Let your daughter grow up without intervention as you know best and let the paediatricians spend their time on the children whose parents are desperate for help, diagnosis and guidance.

I wish you both well.

This is a weird thread!

What actual harm is going to happen to a 2yo for being given therapies that are appropriate to a child with autism? Therapies for developmental delays may help a child with autism or a child without autism. They will be more or less successful but ultimately you can't remove autism and neither can you remove the causes of other developmental delays. The therapy should just help a child make progress in areas where thay have problems.

I think it is fair to comment that autism can arise from a variety of causes. Many of us are aware that we have inherited the condition but that doesn't mean that this is the only way of ending up with the condition. The condition isn't actually a precisely definable thing that can be definitively diagnosed in every case. It may just be a useful label that suggests that a certain treatment or therapy may help.

Hi 4390evans,                                                                                                                                                                            

To prevent this discussion from being too recursive, and as I think that it is becoming removed from the topic at hand; here is a simplified version of what I suspect your original question is and a simplified response:

Question:

Can I change therapists or psychologists if I do not feel comfortable with them or if I feel they are too eager to disregard my opinions, prescribe medication, generate diagnosis without sufficient explanation, do not feel that they are providing adequate service or if I do not feel comfortable with their manner?

Answer:

Yes. It is considered good practice within the industry to allow patients to change therapist, psychologist and/or psychiatrist if at any stage they do not feel comfortable with any of those items.

To avoid any unnecessary stress or confrontation, your GP can help find another psychologist to restart analysis, therapist to restart therapy or specialist to restart analysis/treatment in this specialism.

Obviously, as your daughter is far too young to make her own decisions on the matter, you, as her guardian, can make any such requests. Please note that all notes taken throughout these assessments/treatments will be made available to new psychologists/psychiatrists/therapists for review, but they are obligated to take a pragmatic view of the situation at hand. Your GP is also required to maintain a record of such diagnoses.

Additionally, autism may not necessarily be what you may think it is, and I suggest that you complete further research on the matter to better familiarise yourself with both what it is and what this would in reality entail. Note that you will need to, if you have not already, consult the specialist on quite which area of the ASD spectrum he believes your daughter is and so research accordingly (during your research, I suggest you disregard Kanner autism and any papers, where read in isolation, before 1994. Polyvagal theory is more a discussion on cause and effect but would also be worth reading, especially as it is the current favoured theory on potential physical causes of conditions such as Autism).

Also please understand that many people on these forums, including myself, are trying to understand their own condition through the experience of others. As such, an apparent disregard or affront this condition may be considered offensive (although I do not believe this was your intent).

classic codger said:

Your insistence that you are right and everyone else is wrong is also a typical AS behaviour. If I may pick you up on one small point, there is no such thing as 'opposite' ends of the spectrum, there is a range of traits and effects that apply to anyone on the spectrum. 

*I don't think that everyone is wrong, I think that people are jumping to concusions and to desperate to label my child without first listening to her parents, daycare and other people who come into contact with her daily.

Whats more worring about the spectrum point is that he pediatrician who seen nora used"opposite ends of the spectrum" when talking to us, but we already knew this as my partner is at uni studying psychology and counselling and they also use this phrase when talking about Autism.

 I am baffled as to why you would come onto an Autism website just to tell us that in your unqualified opinion, qualifed people who are trying their best to help you, are wrong.

*I came on here as I thought there would of been people who would of been wrongly diagnosed or in the same possition where they themselves dont think their child has Autism and may of been able to help me.

There are many parents on here that have diagnosed children, there are parents who struggle desperately to get the right help for their undiagnosed children, but you are the first person I've seen on here who has come just to tell us that your child cannot possibly be AS, because you know better than anyone. You may be denying your child the very help that she needs. I agree with Pentadactyl, blaming the 'operation' is convenient, but totaly misleading.

*I know there are parents fighting to get their child diagnosed and that's because they think their child has Autism, and you support this as you think they know best  because they are the parent of that child, yet when I am saying I dont think my child has Autism you are saying leave it to the professionals, they know best? 

why you would be so afraid of an AS diagnosis. 

*I am not afraid of the diagnosis I am afraid of the miss diagnosis.

I have asked an NT to review this before I post it. I'm told that in their opinion, you aren't likely to take any of it on board and that you'll just have a 'paddy' over it. This is someone who has known me, and known me very well, for a number of years and STILL doesn't always understand me. They are puzzled as to how you think that casual, non-intimate contact with AS people could possibly give you any depth of insight into the condition.

*Presume much? Some of the information on this thread has been very helpful although nothing that would help educational wise for my daughter. People are complicated, not just those who are diagnosed with something. 

I am not easily offended and like to see that people speak what they think is truth and give their oppinion and tell me of past experiences etc, but there is a difference between being truthful and being rude!