Introduction and appeal

Yes, as I sit up not being able to sleep for one more night, I would agree about notes and recording. It may seem extreme to someone new to dealing with the process that comes with an Autistic child. Hopefully you will not need these things. It would provide some insurance however and definately leverage which you will almost certainly require at some point. If I had done this from the start perhaps things would have evolved differently. Even if not it would have made for a very interesting insight into the workings and absurdity which can occur in trying to get help for your child.

You may think some of my statements are over the top or exagerated.

If you do then you will most certainly be like a lamb to the slaughter when dealing with this unpleasant process.

My daughter had her 1st 2 month DTP(no longer available) vaccination on the 16/8/96.

By the 19/8/96 she was admitted by emergency with blood in her stools and the detection of a rotavirus(presumably from vaccination). This problem persisted in the form of bowel problems from then onwards. Long before any thought of autism we had to endure a medical profession which seemed to be in denial of our daughters problem.

The mother is rewarding the child for retaining stool causing constipation.

The child is being fed too much.

The child is being fed the wrong things.

This is a psychological problem not physical.

The mother has munchausen syndrome and is making child ill.

-> None of the above are true but the medical profession is quite happy to entertain any of these far fetched nonsense rather than the sad and more obvious truth.

And so it went with the emerging autism.

First a referal which had been sent out but never arrived.

Then some recognition of dsypraxia and possible autistic traits. Not admitted to us only in notes. A mention of possible dyspraxia was mentioned.

Then many years of contradictory statements and denial of autism, emphasizing anxiety only. We must focus on anxiety.

Then flat refusal of any autism. Followed by rallying cry that there is nothing available for autistic children and that her needs are being met and no diagnosis is required.

Followed by a 'leak' that our region has a policy of no diagnosis for autism.

Followed by the person leaking this information having their contract not renewed.

Followed by assesment day, guess what she is in fact autistic. Apparently the nurse knew all along she was autistic which is strange because only the month before they were adamant she was not.

Quite a bit later my daughter's mum tried to get help with what we now know was the first signs of her psychosis. Naturally she was imagining this and it was ignored and fobbed off until eventually she had a serious attack and A & E did what the Mental health Doctor would not do. Admit her, assess/diagnose her.

If you come forward concerned you are being over reactionary and dramatic.

Despite this the Doctor is suggesting a lack of care and that this problem should have been addressed at an earlier stage. Then as a result of possible liability they are now trying to suggest that she has only severe autism and not psychosis. Despite having been extensively tested and evaluated as having psychosis.

Can you see a pattern yet.

I know my daughter and I know her autistic traits, I also know after her first serious pyschosis the syptoms which are clearly different from her autism.

This stuff never stops, it never ends, the potential for endless bull***t from the medical profession is infinite and they are very good at it.

Protect against litigation is one of their priorities.

Don't even go near Autism|Vaccination|Bowel issues, the men from the government may pay you a visit.

Your child falls under mental health, this pretty much means they can bypass many of your and your childs human rights if they decide to operate under the child protection act. If you have an autistic child or child that presents as autistic then they can use this to intimidate you and get you to back off. When you push for diagnosis they can suggest all manner of things, sexual abuse, munchausens etc.. They don't have to prove a thing all they need to do is suggest enough concern then they can take your child away, you may never see them again.

Oddly once you back off pushing for diagnosis they no longer are concerned about such things and leave you be. Strange that.

When my daughter was in P5 I think I was waiting in my car to pick her up from school and heard a real story of a boy who has Aspergers, this was wrongly diagnosed as psychosis and he was given anti pyschotic medication which made him paranoid. He attacked teenagers with a knife and was detained. Later the Doctors admitted there was a wrong diagnosis in his case but they also maintained he was not in a fit mental condition and would be detained indefinately. Every year a panel of Doctors/pyschiatric decide if he is in any condition to be seen by his parents. He has not been seen since by his parents.

That kind of a story puts you right off pushing for diagnosis it has to be said.

Unfortunately you often don't get a choice. Events mean you cannot sit on the fence. You are locked into this even if you don't have the stomach for it or wish for an alternative route. You end up having to walk the only route available.

So yes, make your own notes and record conversations.

You will be glad you did. 

Yes, as I sit up not being able to sleep for one more night, I would agree about notes and recording. It may seem extreme to someone new to dealing with the process that comes with an Autistic child. Hopefully you will not need these things. It would provide some insurance however and definately leverage which you will almost certainly require at some point. If I had done this from the start perhaps things would have evolved differently. Even if not it would have made for a very interesting insight into the workings and absurdity which can occur in trying to get help for your child.

You may think some of my statements are over the top or exagerated.

If you do then you will most certainly be like a lamb to the slaughter when dealing with this unpleasant process.

My daughter had her 1st 2 month DTP(no longer available) vaccination on the 16/8/96.

By the 19/8/96 she was admitted by emergency with blood in her stools and the detection of a rotavirus(presumably from vaccination). This problem persisted in the form of bowel problems from then onwards. Long before any thought of autism we had to endure a medical profession which seemed to be in denial of our daughters problem.

The mother is rewarding the child for retaining stool causing constipation.

The child is being fed too much.

The child is being fed the wrong things.

This is a psychological problem not physical.

The mother has munchausen syndrome and is making child ill.

-> None of the above are true but the medical profession is quite happy to entertain any of these far fetched nonsense rather than the sad and more obvious truth.

And so it went with the emerging autism.

First a referal which had been sent out but never arrived.

Then some recognition of dsypraxia and possible autistic traits. Not admitted to us only in notes. A mention of possible dyspraxia was mentioned.

Then many years of contradictory statements and denial of autism, emphasizing anxiety only. We must focus on anxiety.

Then flat refusal of any autism. Followed by rallying cry that there is nothing available for autistic children and that her needs are being met and no diagnosis is required.

Followed by a 'leak' that our region has a policy of no diagnosis for autism.

Followed by the person leaking this information having their contract not renewed.

Followed by assesment day, guess what she is in fact autistic. Apparently the nurse knew all along she was autistic which is strange because only the month before they were adamant she was not.

Quite a bit later my daughter's mum tried to get help with what we now know was the first signs of her psychosis. Naturally she was imagining this and it was ignored and fobbed off until eventually she had a serious attack and A & E did what the Mental health Doctor would not do. Admit her, assess/diagnose her.

If you come forward concerned you are being over reactionary and dramatic.

Despite this the Doctor is suggesting a lack of care and that this problem should have been addressed at an earlier stage. Then as a result of possible liability they are now trying to suggest that she has only severe autism and not psychosis. Despite having been extensively tested and evaluated as having psychosis.

Can you see a pattern yet.

I know my daughter and I know her autistic traits, I also know after her first serious pyschosis the syptoms which are clearly different from her autism.

This stuff never stops, it never ends, the potential for endless bull***t from the medical profession is infinite and they are very good at it.

Protect against litigation is one of their priorities.

Don't even go near Autism|Vaccination|Bowel issues, the men from the government may pay you a visit.

Your child falls under mental health, this pretty much means they can bypass many of your and your childs human rights if they decide to operate under the child protection act. If you have an autistic child or child that presents as autistic then they can use this to intimidate you and get you to back off. When you push for diagnosis they can suggest all manner of things, sexual abuse, munchausens etc.. They don't have to prove a thing all they need to do is suggest enough concern then they can take your child away, you may never see them again.

Oddly once you back off pushing for diagnosis they no longer are concerned about such things and leave you be. Strange that.

When my daughter was in P5 I think I was waiting in my car to pick her up from school and heard a real story of a boy who has Aspergers, this was wrongly diagnosed as psychosis and he was given anti pyschotic medication which made him paranoid. He attacked teenagers with a knife and was detained. Later the Doctors admitted there was a wrong diagnosis in his case but they also maintained he was not in a fit mental condition and would be detained indefinately. Every year a panel of Doctors/pyschiatric decide if he is in any condition to be seen by his parents. He has not been seen since by his parents.

That kind of a story puts you right off pushing for diagnosis it has to be said.

Unfortunately you often don't get a choice. Events mean you cannot sit on the fence. You are locked into this even if you don't have the stomach for it or wish for an alternative route. You end up having to walk the only route available.

So yes, make your own notes and record conversations.

You will be glad you did.