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

Pentadactyl said:

Additionally, I am unsure as to the negative impact of the proposed paediatric services on a pre-school child. Wouldn’t this be beneficial? Especially if she is a little ‘slow’ I would hope that the environment provided in this centre would be significantly more controlled (and so far less intimidating) than a general day-care centre would be to any child.  Would there be any better services present at the pediatric centre, which would allow her some time apart from the potentially excessive stimulus presented by her current day care?

Please forgive my ignorance here, but what negative implications would a formal diagnosis have? Please also discuss with either your GP and/or the doctor who diagnosed your daughter how often she would be re-assessed following diagnosis (as you rightly point out, she is only approaching three, and all children, autistic or not, will develop at different rates).

I totally agree that she needs some type of help, but what the pediatrician said was that he can not give her any help unless she is diagnosed with something and Autism seemed to be at the top of his list. 

I would take any help anyone would give me for my child but I am not having her diagnosed with something when she is only 2. I have a friend whith a child who didnt speak till he was 4. So everyone learns and does things at different times. My eldest child was singing songs when he was 13 months old and my second child wasnt so its just differences in childeren and I dont understand how a trained doctor doesnt think of this.

[Removed by Mod] has a key worker who has one to one time with her and teaching makaton, using picture signs with words etc and I and due to start doing the same at home.

[Removed by Mod] is not intimidated by anything, she has no fear of people at all and will play along side or with them, she loves and has thrived at daycare since starting a year ago.

(Hi 4390evans, I've removed your daughter's name to protect her privacy, Sofie Mod).

Hi 4390evans,

I've just removed the name of the medical centre in your post as we try to avoid naming services.

Thanks,

Sofie Mod

Thank you. I was just a bit puzzled as to how you could be so certain.

I think that Pentadactyl sums up extremely well, and I think that you would do well to take note.

Interestingly, one aspect of AS that has many of us ranting at times is that despite our best efforts, we can never get anyone to listen to us properly. There is a body of strong belief that AS is genetic. I've posted myself, as have others, my deep belief that one of my parents was also AS, and I have evidence that other family members were also affected, both my and our parents' generation. Indeed, this was the subject of some discussion during my own diagnostic assessment.

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. It is for this reason that I, personaly, strongly object to the use of 'high' or 'low' function. Our functionality depends very much on our individual traits, and how they are being stimulated at any particular time. It's a movable feast.

I don't mean to be rude or offensive, so please don't think I am being when I'm just trying to help, but you are not qualified to say whether anyone is on the spectrum or not. Knowing some AS people does not give you a studied insight into the condition, whereas your insistence that it does is indicative of an AS trait. If, despite your lack of knowledge, you still insist that neither you nor your child is on the spectrum, 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 fail to understand what kind of help you would expect from people who have direct experience of the condition, when none of us know you and for certain, none of us are qualified to offer an opinion or diagnosis. 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.

It is obvious to me that you love your child very much, and I cannot for the life of me understand why you would be so afraid of an AS diagnosis. It isn't mental illness, we are incredibly talented people, and we try to be kind and helpful, but we always speak the truth with brutal honesty, I'm told. For my part I see nothing to fear from truth and honesty. If you find my post brutaly honest, but then think that it's personal, you really don't understand AS at all, despite your 'contacts' with it. We can only offer our opinions, we have no agenda, and truthfuly, your choices and their consequences are yours alone to make and to live with, including any unintended harmful effects on your daughter.

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.

Every parent in the world has the most perfect and intelligent child that's ever been born. In the real world, I urge you to follow Pentadactyl's very good advice, for both your sakes.

Hi 4390evans,

I am neither a doctor no paediatrician, nor do I have any real experience of others with Autism or similar conditions. So please review my opinions with that in mind.

From your initial posting, all of habits your daugher presents are, in combination, somewhat typical of a child with autism. Of course, that does not mean there is not an alternative explaination. From anecdotal evidence, I suspect that if your daugher is autistic, she can also understand far more words that you may expect (although she cannot, at least apparantly, say many). Another indication of autistic traits would be if you are aware that she learned to say a word and then appears to have forgotten it, and if she appears to do alot of speaking when she thinks that no-one else is present/can hear her. Further to this, many parents of autistic children have concerns as to whether their child has hearing difficulties as they occasionally do not respond to someone calling their name, for example, even when this is done at close proximity (i.e. 'selective deafness').

I don’t think you should blame yourself or the surgery for any of her current behaviours, and I especially don’t think that she ever lost trust in you whatever actions you were taking (especially as they were certainly in her best interest, e.g. preventing her from removing dressing/stiches).

It is of note that, when I was much younger (2-3) I also had surgery which heavily restricted my movements for several months. Obviously I only have vague memories of these events, however I later found that there was some significant concern for my well-being for some years afterwards and was always considered ‘slow’ until late in infant’s school where I suddenly figured out how to read (despite the best efforts of my parent up to that point). Although I was unaware until recently, it appears that my parent’s blamed any strange behaviours and developmental delay on this surgery ( what shocked me slightly about your post was where you have written that she was always a smiley and happy baby until that point (i.e. the operation). This is very similar to my parent’s wording. Regardless; I suppose my point here is, maybe the surgery is responsible, maybe it is not, but regardless of the cause you have noticed that something appears amiss, and so although all of your concerns should be indicated to an assessor, please do not dwell on them – I suspect that her quality of life is much better following the operation than it would have been without it.

It is not easy to agree with a doctor, especially if they are not telling you what you expect to hear. Please also bear in mind that you are your child’s mother, and so spend a lot of time with her. Because of this extended contact, you may have become ‘blind’ to some of her mannerisms, i.e. they are normal for her. As an example, some babies are not particularly motile when very young (ages 0-1) and so develop a condition known as ‘flat-head syndrome’. This condition is exactly as it sounds and causes people to develop a wide or atypical skull, which, if nothing else, can look a bit odd if there is no hair to obscure this condition. Regardless, many parents of babies affected by this condition do not see this issue at all, despite it being quite obvious to other family members etc. There is also another recent study which suggests that some parents of particularly obese children are unable to see them as such, but I digress. My point is that sometimes you need a third party (qualified and not afraid to offend) to perform a diagnosis in order to be made to realise that something may be wrong.

A second opinion sounds like it would be beneficial, as you are obviously very concerned about your child’s health and short term opportunities.

Additionally, I am unsure as to the negative impact of the proposed paediatric services on a pre-school child. Wouldn’t this be beneficial? Especially if she is a little ‘slow’ I would hope that the environment provided in this centre would be significantly more controlled (and so far less intimidating) than a general day-care centre would be to any child.  Would there be any better services present at the pediatric centre, which would allow her some time apart from the potentially excessive stimulus presented by her current day care?

Please forgive my ignorance here, but what negative implications would a formal diagnosis have? Please also discuss with either your GP and/or the doctor who diagnosed your daughter how often she would be re-assessed following diagnosis (as you rightly point out, she is only approaching three, and all children, autistic or not, will develop at different rates).

I hope this has not been too rambling, and I hope I have not mis-understood your position.

Edit: I have edited this message, as speaking to your GP would indeed be a good first step here.

asparagus said:

I don't understand what you are asking for because in the first post you said the Pediatrician was not listening to what you were saying but concerned about the Autism. But you say how do you fight to have a diagnosis? Confused

What I am fighting for is the right kind of help for my child. She does not need the help you would give to an autistic child, she needs the help you would give a child who is behind.

She has been refered to [removed by mod] where the doctor who she seen about her problems seemed to intent on getting her assessed for autism just because she is not giving eye contact or talking, bearing in mind she is only 2! 

For me the doctor seemed to pushy he didnt want to hear what I had to say it seemed like he was saying his word was rigt and thats be all and end all. 

Ive booked another appointment with my gp to get my child refered somewhere I will be listened too. A mother knows her child better than any doctor who has only seen her for 20 mins. 

I want the help for my child, I want someone to help me help my child eg, education wise.

I don't understand what you are asking for because in the first post you said the Pediatrician was not listening to what you were saying but concerned about the Autism. But you say how do you fight to have a diagnosis? Confused

Please be aware that because some experience issues with some known symptoms not everyone with autism may experience that. I was diagnosed with Autism last year and the number of people who know about Autism who wait for me to shake hands - because some wont, I am finding harder that if those people who only heard about  thatAutistic trait, rather than getting to know what I may feel.  I really do vary with eye contact. I will make eye contact but sometimes I wont and I havne't worked out any logic to that. But please do not stereotype us all to having all the same symptoms-all the time even because we also experience Autism in our own unique way.

All I know is that I am now 47 and last year just received Autism Diagnosis and was born with heart defect which had major surgery around 6 mont old then again around 8 year old to complete it. I didn't have to fight very hard for the Autism Diagnosis. But there again am sure events through life happend because of Autism wasn't thought of but wouldn't have been back then, being female and not severe. It was suggested to me by a Psychologist that may be Asperger's and Autism was the final result but I was warned not everyone who is referred receives the diagnosis they perhaps 'want'. She may be on the ASD Spectrum without it actually being Autism. 

But first steps first you go to the GP and ask them about the procedure for refering for an assessment.

classic codger said:

 I don't mean to doubt your word, but please may I ask if you have direct experience of autism? 

Ive had alot of direct contact with people with autism and asperger syndrome I worked with young adults I also have  a friend with a young child and a guy I work with who has autism (both on opposite ends of the spectrum). I am in no way against anyone who has it and they are no different to me but what I am against is someone trying to tell me what is wrong with my child when they are not willing to listen what I am telling them about her. One minute he is saying "oh well she is not giving eye contact to anyone" then when I say "she does with us" he says "oh well you're the parent she will do" I couldnt win with him!

longman said:

Experimenting with food can indicate sensory difficulties. 

Also bear in mind some people posting on here have autism, and might be a bit alarmed at your determination to fight against the diagnoses. Autism is a person. Not all of us want to be cleansed or eliminated or erradicated at birth.

She has never had any probles with eating at all it was just what the daycare thought. 

I dont understand where you have got the last part of that reply from? I didnt say people with autism should be erradicated, what I said was I know my child does not have it.

Fighting against my daughter being miss diagnosed is the right thing to do, what should be more worrying is for people just accepting a diagnose from a doc when I know my child better than anyone else.

I'm sorry to hear that you both have had such a traumatic time. I've never experienced surgery, or the effects of it, on a child so young, so I can't knowledgeably comment, but I hope that someone else has and has something helpful to say.

You seem to be quite vehement that your isn't autistic. I don't mean to doubt your word, but please may I ask if you have direct experience of autism? As Longman says, autism isn't necessarily as frightening as it may first appear, it isn't anything other than a diagnosis of the different kind of people that we are. I can only endorse Longman's statement that it is calledf a Spectrum to reflect that there are common issues but many different aspects to the way that people are affected by it.

Parents with autistic children do find great delight in them and enjoy them just as much as any other child, albeit in a somewhat different way. We still have talents and abilities just like anyone else. I think you would do well to listen carefuly to the experts and let them do what they do. After all, if they eliminate autism, it brings you one step closer to the truth of the situation.

I love that you love your daughter so well, your concern for her is entirely natural. I wish you both the very best.

I have heard of some situations like shock give rise to autism-like behaviour, such as after a car accident. But then autism is based on differences in the brain, and external factors could cause similar changes perhaps.

I appreciate your observations of the symptoms as post op behaviors, but wouldn't it be better to know one way or another whether it is autism or not? If it is autism you cannot wish it away.

Experimenting with food can indicate sensory difficulties. Avoiding eye contact at that age is important to look into as babies do seem to try to make eye contact with everybody, as a primary instinct.

Autism is an umbrella label, there are a lot of different characteristics and outcomes. You may be being affected by popular images of autism or preconceptions people seem to have.

Also bear in mind some people posting on here have autism, and might be a bit alarmed at your determination to fight against the diagnoses. Autism is a person. Not all of us want to be cleansed or eliminated or erradicated at birth.