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

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.

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.