asd/schizophrenia

[smallworld]

I have been pondering this subject for some time after a family member was dx at 18 with schizophrenia. I have been reading about the misdiagnosis of this condition with regard to asperger's syndrome. I don't really want to go into the specifics but suffice to say, the treatment he is receiving is not working. I have asked the parents to mention that there is a close relative with asd, and another with as but they don't seem to think there may be a connection and haven't raised the issue. I really think that this avenue should be explored.

Can undx asd/as appear as schizophrenisa in late teens, or would some other signs have appeared at an earlier age ?

I had always remarked on this child's withdrawn/passive nature, and the apparant conversion into 'trouble-maker' once reaching teen years. (not that unusual I know)

I just need some back-up before I pester them again re. asd. or will give up this idea as crackpot !

Keep coming across Patrick Holford's book 'Optimum Nutrition for the Brain', has anyone read it ?

I know you're a knowledgeable lot on lots of subjects, but this is a tricky issue (he's currently sectioned) so I have to tread carefully (wish I could make an anon. post !! ).

I'd really appreciate any opinions, it's taken me since my own son's dx to dare post/face this.

wac.

[Malika]

Hi

This is very important point please make some research about Wendy Lawson who was wrongly diagnosed with schizophrenia and in fact was on the autistic spectrum. This is one of the links, you can find many more searching about Wendy Lawson there are some good interviews with the BBC

 

apana

 

Hope this will be useful thanks for your e-mail about fragile X.

 

Malika.

[smallworld]

Thanks for that Malika,

Funnily enough, I knew of Wendy Lawson cos a good friend of mine heard her speak, and told me how fascinating her life story was. She told me about her talk specifically cos Wendy used to jump out of windows like my son, she explained it as she needed to know she could get out (and obviously had to try it out too! )

I didn't know that she had been originally dx as schizophrenic. From what I've read on the net so far, this misdiagnosis seems to happen with childhood schizophrenia.

There were no concerns with this family member until 18, but to honest, that to me doesn't mean he was ok.When his family moved 200 miles when he was 16 he couldn't cope with the change and quickly moved back to stay with his gran.

What really stays in my mind, is that we have a photo of him around age 5, and he has exactly the same look to the camera as my son. It's like there, but not there, if you know what I mean, very solemn.

I think that this bit of the family think I see asd everywhere but I think I may have a vaild point, given that the medication he's on seems to be making him worse.

I look further into this, thanks for the nod in the right direction,

wac

p.s. like you I wanted to know if fragile x or not.

[smallworld]

oops, forgot to say, it's nice to know i'm not the only person up at this ungodly hour, am escaping snoring, nuff said !

[florrie]

I'm interested in the links between asd and mental illness, my own father had been diagnosed as manic depressive in the 50s after suicide attempt, when forced into a job he couldn't cope with and he would get very violent and completely mad when I was a child, when he was overloaded with stress, I now realise without a shadow of a doubt he has apergers obsessional interests to the exclusion of all else and lifelong social withdrawal, he couldn't cope with work he would get stressed and violent, luckily my mum was the main bread winner,he very rarely has these episodes now and not as severe all his stress has been removed ie children, but doesn't acknowledge it is anything to do with him, but he thinks other people made him like that.

 

I'm also interested in nutrition and have read Patrick Holford s book on optimum nutrition for the brain, many people think gluten is a factor, it is certainly worth trying many people get some improvement, a psychiatrist in America claimed to get complete cures of schizophrenia when cutting out gluten and testing for deficiencies and correcting, Mercury is also something that maybe related, research has shown people with autism to have a buildup of mercury in their system.

 

Things going on in the brain are very complex but I believe that foods and poisons could affect it to some degree.

 

As for your friend, it could be aspergers, I would want to have tests done to test cognitive function of receptive language processing by someone with knowledgeof asd which would be a clue, because, these processing problems are what are believed to give rise to the autistic symptoms ie obssessions need for routines social withdrawal or other behavioural problems.

[nellie]

Hi,

 

I don't have a lot of knowledge on the subject, but I believe that schizophrenia was mistaken for AS in the early days before AS was fully understood and possibly still mistaken for AS.

 

Wendy Lawson was asked if she heard voices and she answered yes. They meant did she hear voices in her head, but they didn't ask her that!

 

You can find relevant information on these links.

 

Wendy Lawson's website

http://mugsy.org/wendy/index2.htm

 

Mental health and Asperger syndrome

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=298&a=3346

 

Asperger syndrome: a clinical account

http://www.mugsy.org/wing2.htm

 

 

Nellie xx

[lil_me]

My sister was diagnosed with an illness which is a type of schizophrenia last year, and I can see why its mistaken, she even says now she can understand how my son feels about certain things much better as she feels the same herself.

 

She is extremely reliant on routine, does not understand most social things any more, has extreme obsessions, mutters to herself, flaps her hands, flicks her fingers, fears excessive noise, can't tolerate certain fabrics and other very very similar things to my son.

[oracle]

Hi Wac,

 

This is a subject which is very close to my heart as I am certain that I have a cousin who has been living with a mis-diagnosis of schizophrenia for many years now.

 

My cousin was diagnosed with schizophrenia years before my two sons were diagnosed with Autism. It is only since their dx that I have realised that he has probably been given a wrong dx. Now looking back over his childhood (we were kids together) I can see that all of the signs were there then. He was said to be a very shy boy who liked his own company? He would run away from school at every opportunity, even climbing out of windows to find his escape route. When we were gathered as a family he would usually sit underneath the Dining Room Table while the rest of us ate. My Grandmother would always comment that he was just like her youngest when he was small. I believe that she was right because it is also clear to me now that my Uncle has AS even though he remains un-diagnosed to this day. He is almost 70 now.

 

As my cousin got into his teens that is when his problems grew. He would not go to school at all. He was stuck to his Mum like glue and my Uncle was a complete and utter pig to him. After a few years of being shaddowed by my Cousin almost 24/7 my Uncle booked a holiday for him and my Aunt to be taken alone. This was the first time my Cousin had been on his own in their home ever. Within two days of them going he had a complete breakdown and was taken into our Mental Hospital and sectioned. He was then given a dx of schizophrenia.

 

The medication has never worked for my Cousin who still has spells in hospital. I have tried begging my Uncle to do something about this and I have also spoke to the Medical Profession myself about him, well at least thise dealing with my kids. But he still remains with the wrong dx in my opinion.

 

When my Dad died and he came to the funeral my David spent almost all day with him and after the funeral asked me why he had never been told that my Cousin has AS? I would love to tell my Cousin myself because maybe it would make a difference to him. But so far I have not had the courage and I am not after all qualified to give a dx.

 

Sorry to rant

 

Carole

[smiley]

I have to say this one hits a nerve with me too.

My son has been diagnosed with Aspergers and my mum suffers form Schizophrenia, i sill worry to this day that he may infact be schizophrenic, although all his doctors tell me he's not. i guess i have watched my mum go to hell and back and wouldn't wish that on anyone, especially him.

[smallworld]

Thanks for all your replies, I'm really grateful.

I still feel uncomfortable about this post, as if I'm going behind their backs in asking for advice here.

To be honest, I'm the only one who has done much reading on asd so am only one to see the similarities.

When I've raised this possibilty before it's just been dismissed (I think they just think it's an excuse to get onto my favourite topic !)

After reading your replies, I feel I'm not daft to raise the possibilty of misdiagnosis.It's as though his parents have just given in and accepted what the docs have said.

This is a family who are not close by any stretch of the imagination, although they might appear so, which makes putting my twopennorth even trickier.

Thanks for the links Nellie,off to read em now.

Any ideas on members being able if needed to make an anon post ?

 

P.S. Never take any 'plink,plink, fizz' of the XS variety in an evening, I was still wide awake at 3 am !

[baddad]

Waccoe - One other thing to think about is that professionals tend to take things pretty much as they are presented to them: IE if the FIRST professional diagnoses one thing then all subsequent interventions are based on that initial assessment... This is a recognised 'problem' in psychiatric medicine. Think of it this way; a professional believes a patient to be mentally ill; the patient argues that he isn't. The fact that the patient is 'in denial' reinforces the professionals diagnosis... Catch 22 is NOT just a book by Joseph Heller, it is a recognised pitfall of psychiatric and psychological diagnostics. Have you ever asked (ie) an Ed Psych to re-evaluate the findings of a consultant Paed? Rich man/Camel/Needle/Heaven etc...

Obviously, I can't say anything about the specifics in this case, but in general terms ther are many MANY medical precedents to illustrate the kind of errors you're concerned about.

L&P

BD

[Canopus]

According to my dad who is a mental nurse, schizophrenia has been used to describe a variety of conditions including AS. The psychiatric profession also tends to take a "rear view mirror" approach to problems by trying to shoehorn an individual into an already recognised condition as opposed to identifying new conditions. This is probably why it took so long for AS to become recognised in Britain.

[cutie]

Hey this is sooo true when it comes to adults being left untreated or wrongly diagnosed.

 

I was diagnosed as having a personality disorder as a teen when infact it was actully primarily down to the fact that my severe adhd had been left untreated and undiagnosed for too long and it rendered me as being diagnosed with other dconditions because they could never pin point my odd erratic behaviour/symptons.

[Malika]

Hi Waccoe,

 

May be you should try to buy your family members a book about Wendy Lawson, or send them an e-mail with all the links; something easy they just have to click on with a kind of message like " I know you not too keen about the subject but please at least read about it then decide for yourself, mistakes do happen please give this some thoughts" or may be if you really think this wont work just send them some links through somebody else they would be more willing to listen to.

One of my friend has a cousin who was diagnosed with Tourett syndrome when he was on his teen and heavily medicated for years he is now in a terrible state health wise and they recently apologise to him (he is in his 30s) telling him he was wrongly diagnosed and he is autistic.

Hope things will get better.

 

Malika.

[smallworld]

Thanks for the suggestions,

the more I read, the more shocked I am at the number of misdiagnoses.

I do think that even if I manage to get my view across, then convincing the profs to look again will be a different matter.

I think you're entirely right Baddad.

I also think that Catch 22 is a fantastic read for all of us thinking our lives are absurd. If you haven't read it, try and do so.( I think the film's good too, but I like Alan Alda,so that may be part of it !)

I'll keep chipping away,

 

wac

[Malika]

Hi Waccoe,

 

One thing to remember is that Autism as we know it now is fairly recent , 25 years ago I worked in France in a foster house for children with social problems after 1 year training with Psychiatrist and psychologist all being about the Freudien theorie

and bad parenting at the time Autism was recognised only for the most severe children who were unable to communicate. I had in my group 6 boys and 6 girls aged 6 to 8 two of the boys I am quite sure now were on the spectrum, one had been refer for psychotherapy the other one was at school in a special needs section but was not receiving any kind of support other wise he was considered aloof and backward, sadely both of them had been taken away from their mother not because of social services request but because their mother who could not cope had made the request. I think things are changing very fast now and in 10 years time hopefuly at least here and the U.S (France does not seem to have made such progress so far) most of the ASD children will receive the proper dx and more support. I think much more professionals should be trained on autism, for the time being the people who seem to know a lot about the condition are in most cases the parents of ASD children!!! It is for this reason that family members are the one who can make a difference if the family is not aware or not able to understand then .....there is still a long way to go but things are improving.

 

Best of luck keep trying.

 

Malika.

[smallworld]

Hi Malika, thanks for your reply, just caught this before I get to bed, was on amazon buying books, the total came to over 50 quid so wil have to have a think as to want I want to read most urgently.

Can you imagine this 20, or even 10 years ago ? you would have found it very difficult to find anything about ASD, nevermind about the connection with schizophrenia. Thankgod for the internet, I think it has revolutionised the asd world for parents, we now have access to so much info.

In the last school term my son's teacher didn't think he had an ASD cos he didn't have any language problems !! I suggested AS (we're fairly certain after chat with paed.) She still said she thought not as he has no difficulties with language. (!!)Shame the same can't be said for homework !!

We do generally know more than the average teacher, especially if we have more than one child on the spectrum.

However, I still think it would be very difficult to persuade a psychiatrist that his dx of schizophrenia should be questioned (coming from a parent) I'm having enough trouble trying to get the family to even consider bringing up the asd connection in the family.

It puts our own problems into perspective. My sons aren't locked up (effectively)

 

wac

[Malika]

Hi Waccoe and to all

It is in fact very difficult to convince a professional to be wrong however we have the right to request a second opinion, may be a possibility would be to request a second opinion from a professional who is competent about autism???

As for asperger syndrome most of the children who are consider AS by specialist have no language probleme in fact my son has been dx with high fonctionning autism because he had language delay strictly speaking only children with no language problem are dx with AS (this is because of the description made by Hans Asperger) however somebody like Tony Atwood consider all autistic children who are hight functionning and have developed good language skills (even if it was later than normal) to be AS. I had a very similar pbs with my son school as while I was convince he had some form of autism since he was in year 1 and I had to wait till year 3 to get a dx still when I went to the SENDIST the Head master still said that the school do not recognise H to be on the spectrum.

About books to buy from amazone there are plenty to choose from Tony Atwood books are certainly to consider ther are two other I did find useful for a deeper understanding of the condition "A mind apart from Peter szatmari" who has build up fictious character taking exaample from real people this in order to highlight typical behaviour of AS children another one is "Understanding autism the easy way" I cannot remember the author now as it was a book I borough from the library I loved that book as it put problems with autistic in perspective and it's helping to understand the way our children see the world. I have read many books and spend more than 100 quids on it even before my son was officialy dx but I think it was at the time the only way my mind could cope. still I was not prepare for all the pbs to come especialy with the school and even with the medical team which I find very passive, this what's prone me to ask a referal for Great Ormond Street .

I hope I have not been to boring.

Malika.

[andrwg]

Hello!

 

Personally, I have been wondering for some time whether I may have traits of schizophrenia as well as Asperger syndrome;

 

When I was in the early childhood years, I accidentally crashed with another pupil in a pre-elementary school; i.e. one year of schooling in order to be socially fit for starting in elementary school.

The crucial point for me is that I remember well that I placed the whole guilt and responsability on myself, as if the episode was my entire fault, which it rightfully was not.

Really, when things happen also today, I react similarly, charging myself very much for outside things happening in daily life.

 

Another issue is that of not being able to understand the proportions of situatuons and things being said - I over-dimension peculiar aspects within situations so that I get a somewhat distorted idea of the substance of the situations.

At the same time, my ability to reason is often absent, leading me to difficult brain work, much thinking.

I wonder if these traits are related solely to the Asperger characteristics or if they could relate to a dash of schizophrenia.

 

best wishes,

Andreas

[florrie]

I relate to what you are saying andrwg, in the past people with aspergers got misdagnosed with scizophrenia, the experts researching schizphrenia donn't even think it actually exists, and think it is a collection of different symptoms and yopu won't get two experts who even agree exactly on what it is. The researchers into schizphrenia have discovered there are information processing difficulties often with language processing and neurotansmitter problems and a collection of other things, only I can't remember what they all were now, but some of them were similar to autism, I wonder if someone with undagnosed autism is living with anxiety for solong and being expected to cope when they can't whether this would tip them into a psychotic or semi psychotic state simply because the brain can't cope and gets overload, of course this could be then diagnosed as a psychotivc mental illness which is what happened to my father.

[~Jonathan~]

I hope I have not been to boring

 

Nope <'> I enjoyed reading what you had to say

[Malika]

Hi to all

Thanks Jonathan, next week I should get a report from the O.T, I feel that she does not know much about Autism she already said that H does not have dyspraxia, unfortunatly now the medical mental health team is working toghether with the council specialy the LEA I feel they are trying to play things down to avoid many conflict between parents and the LEA (possibly another directive from the government) is anybody feeling the same way?? or may be I am getting a delirium of persecution!!??

 

Malika.

[Malika]

Hi Andreas

I am not a professional but no I do not think you suffer from skizophrenia, to feel confused about real situation and their relevance are I think typical of Autism and AS, I can see it with my son, As far as I know skizophrenia is in certain case a building up in paranoiac reaction coming from a real situation and exacerbated to the point that the person is unable to realised that the reality is no more in connection with their internal anxiety. Let say if a skizophrenic hear somebody wispering he/she become convince they are talking about him (which may be true) and start to build up a story that they understood he is a spy and that they want to ambush him. The difficulties years ago was that people with AS would misunderstant situation specialy social one and would then become frustrated with sometimes an agressif behaviour they would then misunderstood the various question about the events (another pbls is that As have avery poor memory regarding personal events) and in the case of Wendy Lawson who was ask if she "could hear voices" she answered yes because she interpreted the question literaly as she was not ask "do you hear voices in your head". If I am right skizophrens come to a point where they are completly detached from reality and their story reach the level of absurdity even if taken independently they can be very logical.

I remember two friends when I use to work in Paris one was computer progammer

and became nentally ill with "paranoiac neurosis" he always kept working but would need time off on regular basis as too much stress would triger paranoiac reaction he was however very conscious of his problem and quite able to cope with it in some occasion I happen to think that he had Autistic trait. Another friend who was nuclear ergonomist and wanted to do that work because he was so worried about the french nuclear programme which he percieved as extremely dangerous and though he could do something about it from the inside to make sure the security was at the best, he eventually became very ill and completly cut off from reality for more than 10 years ,his sister took charge of him after he had spent 2 years as a tramp in Paris streets, I have heard than 5 years ago he eventualy necovered from his skizophrenia he is now doing some menial job knowing perfectly nobody would ever gave him any kind of responsability. Having seen him on vacation shortly before his illness I remembered how he had plan his future to leave Paris and move with his girl friend (who was married to somebodyelse) to a smaller town in France it seemed at the time so logical that I never though to question him about his project the reality was that his friend had always told him she would not leave her husband and his employer had no jobs possibility in the area he had plan to go. I remembered being very shock with both tragedy they both much better now, the first one thanks to some help from his work and some good friends and the second one thanks to his sister who (with her family) took care of him.

 

Sorry for the lenght of this mail but my point is that it is the level of support those people received which eventualy made them able to cope with their situation. It is for this reason that we as parents of vulnerable children have to fight for their well being I dread to think about the kids who have autism or AS and are not understood by their family what ever the reason for it.

 

Yet again I hope not to be boring ,

 

Malika.

[andrwg]

Hello florrie,

 

What you write I recognize well. I often have much anxiety, I over-dimension peripheral aspects of situations and try to reason clearly and cope, but my brain is very confused then and I have obvious problems with bringing order in the proportions of situations. I am anxious because I enlarge the proportions and thus somewhat distort the substance of the situations. I try to cope and reflect logically, but I can't, my brain gets overloaded. My mother says to 'use your head', but I have tried and I think it is very difficult, I am confused and scared and want to cry . Luckily, it does not happen every day. For the most part, I am happy.

 

Hello Malika,

 

I have not experienced tendencies towards paranoia, it is only as to distortions of thoughts.

Edited August 17, 2005 by andrwg

[florrie]

Hello andrwg,

 

I have similar experiences with anxietyand i also do have paranoia but probably with good reason after some the experiences, I have been through.

 

I'm glad you feel generally contented though.

[andrwg]

hello florrie,

 

It is good to hear I am not alone in having these anxiety problems. I feel it is difficult to recover from them but my other positive experiences balance up, so mostly I am glad.