Jump to content
Deblegs

Causes of Autistic Spectrum Disorders?

Do you believe that something may have 'triggered' or 'caused' the ASD?  

304 members have voted

  1. 1. Do you believe that something may have 'triggered' or 'caused' the ASD?

    • Problems in pregnancy?
      24
    • Problems in birth?
      45
    • Catching a virus or disease?
      14
    • Vaccination?
      36
    • Hereditory?
      148
    • No cause?
      18
    • Other?
      18


Recommended Posts

My name is Debbie Hudson and live in the UK. I am 40 years old.

 

I was diagnosed with Asperger Syndrome when I was 35 :angry:

 

I was born with the umbilical cord around my neck which resulted in me being blue all over. For a fortnight my finger and toe nails were blue. Mum thought that I should have been given oxygen at birth.

Share this post


Link to post
Share on other sites

:D Hello everyone,

My son was born perfectly normal(40 weeks term no, painrelief during labour,striaghtforward delivery)weighing a healthy 9lbs 7oz.

He also scored 9 and a 9 on apgar scores.

He was a text book baby, unlike his elder sister(first born nervous parents, made rods for backs e.t.c) .

My son developed normally reaching his milestones either before or at the same time as his peers.

He crawled at 7 months.walked at 11 months and also began to speak single words at this age so by 13 months he had at least 10 clear words.

My son slept well ,played well and ate like a horse.

Then he had his MMR vaccine at 13 months and 7 days, within 24 hours he had a raging temperature which lasted for 4 days (not too unusual).

My son never ever spoke again he still doesnt he is now 3 and a half he uses pecs and makaton to communicate.

He is obsessive,compulsive,irratic, violent, non-verbal has insomnia food intolerances and has no social skills.

All this aside my son is my world, areal handsome little boy(ok im bias) and most definatley vaccine damaged !!!!!.

Thankyou for reading,

Lisa .

Share this post


Link to post
Share on other sites

Hiya Lisa,

 

Interesting that you should mention the MMR aspect today as it was on GMTV this morning (dont know if you saw it or not)

 

At the moment I dont believe that there is a direct causative link between Aspergers and any one thing. Maybe Aspergers/ASD can be caused by a mixture of things. I dont know, I'm not a healthcare professional or a government spin doctor...

 

... However, there are some very powerful arguments out there and I reckon I'm beginning to come round to the fact that ASD's can have causative factors.

 

Does anybody else wish to share thoughts on this?

 

Kris

Share this post


Link to post
Share on other sites

Hi Kris,

I myself was on the news on friday (bbc) as Cameron's case for vaccine damage has been taken on by a firm of solicitors but now the goverment haspulled the plug on his and several others like him legal aid funding.

(the battle continues).

Regards Lisa.

Share this post


Link to post
Share on other sites

I can help but think that genetics has a lot to do with it. Since my son was diagnosed, I've found out a great deal about my own family - my brother is highly likely to have AS (and he thinks so too), my father is very aspie in some respects and so was his grandfather!

Share this post


Link to post
Share on other sites
Guest Anniemoll
I can help but think that genetics has a lot to do with it. Since my son was diagnosed, I've found out a great deal about my own family - my brother is highly likely to have AS (and he thinks so too), my father is very aspie in some respects and so was his grandfather!

I am wondering where Asperger's could come from in our Family. Are you the Mother of this son or the Father?. My grandson (My son's son) could have Asperger's. Although my son has no social phobia's, he has said there is a small possibility with statistic's he kept as a child (mainly sport's statistic's), he does'nt mind his own company (maybe not all the time though). His Wife keep's herself to herself at times, is very limited to what places she visit's and keep's herself to herself, unless she has a drink of alcohol. My son is seperated from his Wife and we no very little about her family, her brother is a computer specialist and supposed to be quiet, also her Father was a bit of a mis-fit (also a drink problem) and we are just baffled as to where it comes from. Really what I am asking is can it go from Mother to son, and Father to daughter as one peace I read on Asperger's is mostly from Father to Son. Also could it come from BOTH sides. I keep thinking different member's from both families might have it.

Share this post


Link to post
Share on other sites

Hi Anniemoll

 

I?m no expert, but I understand that one current theory is that the genes for Aspergers can be carried through either the maternal or paternal line, but that Aspergers needs to be triggered in the child ? perhaps by some event in the womb (eg virus), or trauma at or after birth.

 

Males significantly outnumber females in the population of people affected by the disorder, but as is clear from this forum, plenty of girls have AS too.

 

From your comments, it looks like several people in your grandson?s family could have Aspergers-like traits ? but really it is pointless (but very tempting) to try to diagnose at a distance!!

 

I couldn?t understand why my son (I?m his Mum BTW) only displays some Aspergers traits ? he doesn?t have obsessions, sleeps well and doesn?t do things like flapping his hands or head-banging. My son?s psychiatrist explained that he thinks there might be up to 8 genes affecting AS, and a child might only inherit some of these genes ? thereby having only some of the typical characteristics of AS.

 

It would be great to know more about AS, and where it comes from - given time, I'm sure more knowledge will emerge, so I guess we'll have to be patient.

 

BTW, my parents found this really useful :

http://www.udel.edu/bkirby/asperger/grandparents.html

(the link is in the 'links' section of this forum - thanks Kris)

 

 

Elanor

Share this post


Link to post
Share on other sites

Hi Elanor,

 

I'm glad the link helped. If you come across any others on the internet that you think our members could benefit from then please feel free to post them in our internet section. :)

 

Kris

Share this post


Link to post
Share on other sites

'Autistic Spectrum disorder' is a name given to a collection of behaviours, rather than a physical condition.

 

I suspect that there can be one or many underlying causes. I am sure there is a genetic component as several members of my family (myself included) who have some AS traits. Equally my ASD son had a slightly premature, long and diffcult birth and this may have contributed as well.

 

I am sure we will find out more as research continues, but it's premature to rush to conclusions such as an increase in ASD's being 'caused'by MMR.

 

Simon

Share this post


Link to post
Share on other sites

Simon,

With all due respect for those parents (myself) who have watched their child change from a healthy verbal placid one to that of a non verbal, irratic,confused obsessive hysterical little boy there has to be a cause.

He did not enter this world with any indications of there being a question of ASD until several weeks after having the MMR administered.

He was born on time, good weight, scored high apgars, and reached his milestones either before or at the exact time of his peers.

I have to say many children are born with autism but many are not .

As for the theory that we need to look at family members for signs of "traits" there is not a family on this earth that does not have one form of trait so therefore the whole world should be dx with some form of asd (great idea if you ask me).

What i have to say is my conclusion is not premature in any way , it is evidencial to my child and as i and many parents firmly believe is " The Truth Will Out "(eventually).

Whatever reasons bring us here we are all in the same boat and like you i just want this disibility researched and made more aware and our kids given the same rights and respect and compassion as any child regrdless of creed, colour or disibility.

Regards Lisa.

Share this post


Link to post
Share on other sites

I am sorry if I caused upset with my remarks, all I was trying to do was get across the thought that Austistic Spectrum disorders are behavioural in nature, and could have one of several causes (or no clear cause).

 

So I guess what I was trying to say was that I am not comfortable with a poll that asks us to pick the 'cause' from a list of single causes, which is where we came in.

 

I am as convinced that my son's aspergers was NOT caused by the MMR vaccine as you are convinced that it was. (To be frank, we never really had the placid, verbal stage :( ) I am perfectly ready to accept that we are both right.

 

What we can agree on is that there is a pressing need for further research so that we can all understand the cause(s) of Autism.

 

Simon

Share this post


Link to post
Share on other sites

There are a few things that may have contributed to my problem. My mom did have a difficult birth with me, and the perosn who did the delivery swasn't good (I'm told.) She also drank some druing pregnancy. I myself took a couple of blows to the head during childhood and adolescance and also used a fair amount of drugs from age 12-23.

Despite all of that, I believe that the main cause of my condition is genetic. My father, a brilliant writor, could not drive, maintain a relationship, or hold a normal job for long. He was very ecentric and had trouble changing a light bulb (he'd give away a lamp when the bulb burned out because he thought it was broken.) He moved every few months, talked to himself, and spent much of his life in poverty despite being semi-famouse as a writer. He was given a word processor and gave it to me because he couldn't figure out how to use it.

My mother has many of the same traits, to a lesser degree. She is lucky to have married young, because she has never been able to hold a job for very long and has many eccentric traits, though she, also, is inteligent (and a published writer).

It was theire comon traits that origninaly atracted them to each other, but the marriage didn't last long. My stepfather is the only bread winner in the family, and thank god for him.

So, my belief is that, at least in my case, the main cause of asperger's is genetic.

Share this post


Link to post
Share on other sites

I believe my son's AS is hereditary from his Dad's side. My son (our first born) had a perfectly normal pregnancy and full term birth but was difficult from his first hours in this world and has never looked back ! My husband also has AS (they were both diagnosed just this year) and we think it likely that my husband's elder brother and father (now dead) are/were both AS also. We have tried talking to his brother and gave him a leaflet explaining the syndrome but he seems to have dismissed it as a mental illness and not something he wants to be associated with. As we don't see him very often and the relationship between my husband and him is pretty poor, we are not persuing the issue, but we strongly suspect he also has AS like his younger brother (my husband). We also have 2 perfectly normal girls.

Share this post


Link to post
Share on other sites

i believe my sons AS is from his father although we didnt realise this until my son was diagnosed at 11 his father and i split when son was 1 1/2 because of his fathers violent mood swings and tendancy to go off one on for no reason

 

his father and i get on well know and he knows that he could have it too but he doesnt want to get tested so we cant be sure but my son is a carbon copy of him

 

trace

Share this post


Link to post
Share on other sites

I think my son's AS could be a mixture of many things. But I don't think it came from him having the MMR. Looking back on the way he was when he was smaller, and comparing my 1 year daughter with him, she seems to be that bit more advanced than he was at the same age.

 

I think the causes could be a difficult birth, my pregnancy was wonderful but I was 11 days overdue, and had to be induced. I was pushing for well over an hour before they decided I needed help. My son was delivered by ventouse (suction) and his head was very mis-shapen and he still has a "strange" shaped head. The cord was also wrapped around his neck, although he didn't need oxygen.

I also think it could be genetic, coming from my side of the family. I have a half brother that has had an awful lot of problems in his life and I'm wondering now if he could have AS. But one thing I'm learning is, to stop going over and over what could have caused it. I think I could be driven mad wondering about the cause. Unless like lisapow you are certain of the cause.

 

My son had good Apgar scores, but he didn't crawl until he was 12 months old and he didn't walk until he was 16 months old. His speech has always been ok. But he does seem older beyond his years, which I think is a trait of AS. I'm still learning what is and isn't AS! :)

Share this post


Link to post
Share on other sites

My 12 year old daughter was born with AS she had 'odd behaviour' from the start. It may have been triggered by being severly over due with no one addmiting it untill she was born (too late by then the damage may have been done).

 

My son however was the text book baby for the first 5 months then it all went down hill, he developed normally ie. sitting, walking and talking, in fact he could talk very well and still can to the point where he was assesed as being gifted at 2 years old(now 3) The problems we had were he was never happy, crying all the time and as he got older he would self punish, if we said 'no' when he was doing something that may harm him he would slap himself, bang his head on the floor or wall and generally physically abuse himself.

 

My childrens AS is not linked to MMR I am sure, as my daughter was born with it and my son has not had MMR, I don't want to risk losing what my son has ie speach by having him vaccinated untill I can be sure there is no link.

 

Wez

Share this post


Link to post
Share on other sites

My 9 year old twins were born 6 weeks premature, pretty easy labour. They both had the MMR vaccine. My son has recently been diagnosed with AS (my daughter,his twin is fine) but I feel he showed symptons before the vaccine. He has always been very "one track" and failed his early hearing tests, in hindsight, because I think he was absorbed in the toy in front of him and didn't acknowledge any sounds around him. His hearing is fine. He didn't talk until he was 3 and he hasn't stopped since!!

 

In our case, although my husband hasn't been diagnosed AS, he is very eccentric and obsessive. He is dyslexic and extremely intelligent in some areas but doesn't have a clue in some quite basic things. He can also be unintentionally rude to people, which I find quite embarrassing at times, but is very outgoing and does have lots of friends (mainly through his obsessive hobbies!). I too have quite a few ASD traits.

 

My sister is convinced that the MMR vaccination has affected her son, he has ADHD and severe learning and behaviour problems. He was fine, talked, walked etc. right on cue, very bright baby and after the MMR, he had a fever and has had problems ever since.

Share this post


Link to post
Share on other sites

I think I gave AS to my son. And in doing so I've condemmed him to this life. I'm just like him (or he's like me) I feel more and more hamstrung with people as the years go on. I feel now that I don't want to go to work, don't want to be with people, just want to stay home where I feel safe, which is probably how Chris feels right now.

 

And if I'm responsible, if he's condemmed to a life of unhappiness and depression and stress because of me, I feel hellishly guilty that I did this. Its not his fault.

 

Im sorry if this offends anyone, I'm just feeling really down at the mo, cos Chris is down too and I don't know how to help him.

 

Once again my apologies

Lisa

Share this post


Link to post
Share on other sites

Lisa, Lisa, Lisa,.....no, no, no,.....YOU ARE NOT TO BLAME, whether you or anyone else has AS also!! We torment ourselves if we try to aportion blame for every quirk and medical twist our families share. In the same way that we may torment ourselves trying to find a 'cause' for the condition, when even the medical professionals cannot say for sure. I know and totally understand where you are at right now,..and I think many forum members will too.

 

Lisa,...Chris is lucky that the most important person to him can atleast understand him and relate to him, where perhaps no-one else truly does. My little girl was so frustrated at her Dads lack of understanding of her and being treated as a naughty girl.

 

It is because of messages like yours, that this and other sites on the internet where communication is encouraged, prove to be invaluable. You are not alone.

 

Please, please take a step back and look at your relationship with Chris. He is still able to show you how he feels. Being able to do that will ease his burden. And you must find a way to ease yours, be it on here, or whatever works for you.

 

I hope my message does not come across as patronising or condescending in any way, because I truly can relate to your sense of failure (though for different reasons) and frustration at not being able to wave a magic wand to make things better for Chris. My kindest regards and very best wishes to you both. Please feel free to PM me if you want to scream more privately, but I reckon you are amongst friends here!! :)

 

Don't forget about NAS helplines for moments like this too.

 

Elefan

xx

Share this post


Link to post
Share on other sites

Hi Lisajb,

 

I think we all fell like you at times, when I get like that I tell myself it's all about numbers, if the majority of people had AS then they would look at us and try to find a reason why we are different, there is nothing wrong with being different, everyone is different and with the right support we can all achieve our own idea of happiness.

 

Don't beat yourself up about it you created a wonderful human being, well done. :)

 

Wez.

Share this post


Link to post
Share on other sites

I think Chris has Aspergers because of heredity. My brother has schizophrenia and my mother is a bit eccentric. My dad was very aspie. I am normal!!! - I am really worried about my daughter who is ok but I keep thinking if I passed the gene on maybe she will pass the gene on to her childre. I hope genetics has advanced by then to find out if she carries somethin to stop it being passed down.

Share this post


Link to post
Share on other sites

hello,

i was in labour with my son tom for 30 hours he is my third child, my cervix had only dilated 3cm by then and at last after many hours of protesting the midwife called the gyne and he did a csection. i do believe this amy have contributed to my sons as although lots of docs pooh pooh it. His heart rate dropped ot 50 five times during labour.

Share this post


Link to post
Share on other sites

;) now i come to think about this subject my 4th child ellie shows some aspie traits, she lines up cars and makes noises, but that is about all. my dh also displays some traits, would it be too late at 39 to be diagnosed and would it help him anyway?.

He wouldnt think he has aspie traits, but i think theyre quite noticable.

Im scared to mention it in case he thinks im accusing him of 'passing it on' to our kids. I have two ther kids by my first marriage and niether of them show any traits at all

Share this post


Link to post
Share on other sites

Hi Elaine

 

My husband and eldest son were diagnosed late, 19 and 52. I think my youngest son may be AS, I have told him this may be a possibility and asked him to investigate it. I have given him a test to complete but have had no feed back.

 

I think when you are dealing with adults it is there decision to make, I think they should be made aware of the condition and it is up to them whether they take it further. I would love to know my son's opinion, but I have to accept that he does not want to discuss it with me. Maybe in time he will.

 

I gave my father in law a book on ASD and that was enough, his behaviour altered for the better. He never talked about , he knew, we knew and that was enough.

 

the systemising quotient from autism research.

http://www.autismresearchcentre.com/arc/default.asp

 

Good luck

Nellie.

Share this post


Link to post
Share on other sites

Hi Nellie

 

Thanks for the sites i have downloaded a few for Daniel to try if he will every settle down enough tonight to do them :(

 

Karen xx

Share this post


Link to post
Share on other sites

Hi,

I have been amazed at how many people think one of their parents might be AS. I thought I was the only one! Once my son was diagnosed it became clear that my father has AS.

I have never thought MMR caused my son's AS, as he showed signs before he had it...although I believe the strain of MMR he had (he is 14) was subsequently withdrawn.

Like other people have written, my son was also delivered after a long (30 hour) labour, and was "grunting" when he was born for which he received oxygen and intravenous antibiotics.

He reached all his developmental milestones early or on time, but always had poor eye-contact.little symbolic play,etc, and just a feeling of being "on the outside looking in".

Interestingly, two of my younger children have severe, multiple food allergies with the youngest being treated at GOS for bowl problems which thankfully he out-grew at 18 months.

From reading other peoples' accounts there does seem to be certain recurring similarities with all our children or families as a whole, e.g allergies. Personally, I feel that there is a strong genetic link, and I do wonder whether that gives a susceptibility to ASDs which can perhaps be triggered by some trauma - difficult birth, MMR, etc.

What does anyone else think about a link with atopic problems as part of a possible susceptibility to ASD?

Share this post


Link to post
Share on other sites

Hi all!

I believe my son's Asperger's to be genetic in origin. I'm positive his Dad's an aspie too, and in retrospect, my list-loving, people shy and wonderful Dad may have been too!

Also, so many AS kids are boys, and as far as I know, the 'Y' chromosome carries a lot less genetic info than the 'X'. As they only have one 'X', even if it only had a carrier trait, they would become autistic. My understanding is only rudimentary at the moment, hopefully that'll change in September when I go to college, but I think I've got it right- enlighten away if I'm not! ;)

My boy, Caghal, reached all his milestones on target or before, his vocabulary and speech has always been excellent, and he knew 5 colours by 18 months. But I know he's always been an aspie, he sat in the middle of a roomful of people at 9 months and completely blanked everyone to play with some wheeled toys, an obsession that has never went away! His cousin, of the same age, was Captain Sociable. I recall feeling very uneasy about the difference at the time! Ah, dear old hindsight strikes again!! :D

However, I also think that environmental factors play a part. We live in an area with quite a large industrial focus, also a petrol refinery and several chemical plants nearby too. The incidence of things like Multiple Sclerosis (another one that strikes close with me, my Dad had it) are above the norm here, and I'm sure theses industries have a lot to do with it. Maybe one day, we'll know, but for now, I'm just concentrating on Caghal....perhaps one day, I'll get to be one of the scientists involved in the discovering...(God help you all! :P )

Esther x

Share this post


Link to post
Share on other sites

:( I have 2 children with developmental problems.

 

My daughter I had an assisted birth (ventouse?) long labour but apart from her being a little jaundiced - she seemed fine. I breast fed and she seemed to make great progress on her developmental milestones, she had a problem with with vomitting when I put her onto formula milk but she seemed okay. She had MMR at 12 months and had a temperature for a couple of days. She seemed withdrawn and screamed alot. I put it down a phase and carried on. She did not talk very much although she had only ever used single words but I noticed she did not appear to understand language ie juice or dinner. Eventually she started playgroup - she cried alot the first day I left her but apart from that - she was shy she seemed to be making friends and smiled and gave eye contact. I then took her for her booster MMR. She again developed a high temperature and a rash. She became withdrawn, screamed constantly, lost toilet skills (kept having accidents) and the playgroup eventually expressed concerns about her. Up until then I had just thought it was a phase. She was eventually statemented and diagnosed with Oppositional Definance Disorder, speech and lanuauge problems, elective mutism and learning difficulties. As she was my first child I thought it may have been her birth or was just one of those things.

 

With my little boy it was a textbook pregnancy, I went into hosptial at 8.30am and was home by 3.00pm with him. No problems. He seemed a very inquisitive nosey little mite and was a joy to take care of. I fell in love with him straight away. Because of the problems I had had with his sister it was always at the back of mind (could this be genetic). I soon forgot those worries as he progressed ahead of his milestones. He was a happy, responsive, cheeky little chap, he walked at 10 months, spoke his first words at 9 months, pointed at objects "wats da" there was no stopping him. If you said "bath time" he would run to the bathroom repeating "bath" - in fact I would tell him to shut up as he was such a chatterbox. He had a developmental test 2 weeks before his 1st and only MMR and passed with flying colours! He had his MMR when he was 15 months old. I had heard in the media about possible problems so I asked my health visitor who told me that it was all "nonsense" and there was nothing to worry about. She said my son was a fine healthy little boy - there is no risk. I remember saying "I could not cope with another child with special needs" - again she said don't worry. Scott had his MMR. Within 2 days he had developed a really high temperature. I phoned the surgery and was told to give him calpol (it was a perfectly normal reaction). He was screaming and unresponsive - I could not comfort him. His temperature eventually went down but he seemed to develop a raging thirst and seemed to suffer from dirroeah alot. He also seemed quieter (not talking) and did not respond to all the normal things he seemed to have enjoyed previously. He seemed withdrawn and started rocking backwards and forwards and banging his head against things. He started hand-flapping and stopped responding to simple things like his own name. I phoned the health visitor and told her my concerns. She said "its just a phase - the screaming and tantrums are quite normal". I insisted that she come and see him - at 18 months he had another developmental test - the health visitor seemed shocked (I remember her face). She said it must be a phase and not to worry. They all go through this. I watched my little boy like a hawk because of my daughter. Something in my children (genetic) reacted to that MMR. Today my son has been diagnosed severely autistic, no language, still in nappies (he is 4 3/4)- he still does not know his own name. His language capabilities have been put at less than 9 months old - he also has bowel problems. I believe that just as some people are allergic to certain things so some children have a genetic predisposition to reaction against medicines (ie penicillin) - this also applies to vaccines. I can only go by what I witnessed in my children. Noone yet has explained why my son regressed so dramatically and changed within a very short space of time.

 

I cannot accept that these things just happen! Believe me I tried but the more I find out about other children who have suffered similar problems (the stories all read with frightening similarity) then I feel that I am not going crazy. I have friends and family (who knew scott prior) and video tape and pictures of my son, with my daughter I was never sure and could not think why she had problems - I just accepted that it was one of those things - it took the vaccination of my son to realise what had happened to my daughter! Sorry this is such a long post but in order to understand my views, I feel I have to explain the reasons why. CarolJ :huh:

Share this post


Link to post
Share on other sites

I think maybe heriditary or birth related, my son now 17 was a fairly normal child had some odd quirks but put that down to childhood, then was statemented with ld at 7 and he developed from there and just became stranger, as ive previously posted he was only officially dx asd on monday, that was only after i was asked for a referal which i waited 18 months for, ive always said that kieran would be like my uncle on my dads side, he reminds me of an older version of kieran, he has ocd (undiagnosed) he sticks to routine rigourously and he isnt very literate, he has never got married and lived with my nanna till she died, and he is now in his sixties , then my mother went on to tell me that two of my great uncles had problems and both commited suicide so it does make you wonder.lynn

Share this post


Link to post
Share on other sites

CarolJ

 

Thank you so much for sharing this with us. I can only imagine how you must feel, it must be extremely difficult for you. I hope the support you get from this site helps you in some way.

 

Take Care >:D<<'>

 

Nellie

Share this post


Link to post
Share on other sites

Hi Lynyona

 

Like you, I think my son's ASD maybe hereditary. My husband is diagnosed AS, and we believe his brother and father are too. My son had learning difficulties and was statemented at 10. It is possible that some of his difficulties are due to the problems he had after his birth. He had jaundice which they discovered was due to a blood incompatability which required an exchange transfusion.

 

Nellie

Share this post


Link to post
Share on other sites
:rolleyes: Thanks Nellie, if I had not witnessed the dramatic changes in my son I think I would have gone on a birth or hereditary link - I think it is a genetic predispoition to a reaction (one man's poison theory). Because of my daughter I watched my son and never relaxed for a long time (began to relax at about 12 months). I had conversations with childminders friends and relatives about my worrys for Emma and I remember people saying - at least you don't need to worry about Scott - he's fine. Ironically I used to think I hope Scott won't feel as if he needs to look after his sister when they both got older (you know sometimes you think about the future). All I keep thinking is that if I had linked Emma's problems sooner Scott would be fine! Scott has bowel problems which I am currently trying to get a cofnirmed diagnosis. I am paying for a test from university of sunderland which measures the peptide levels in his urine. In fact I am getting them both tested and have asked the health visitor to monitor Scott and I want copies of every kept on their medical records. Anyway what is done is done, I can't change the past - I just find it frustrating the way we have to fight for everything, even basic services. My son is not high functionining enough for the only autistic unit in our borough and they want to send him out of borough to go to school! It seems its one thing after another. Are the majority of people on this site aspergers because the posts I have been reading seem to suggest high functioning ASD's?

Share this post


Link to post
Share on other sites

CarolJ

 

I think the majority of the parents on this site have children who are high functioning/AS but there are parents like me who have children diagnosed with autism or ASD. My son is now 25, he has learning difficulties and was not diagnosed until he was 19. He is now happy in residential care, being looked after by people who have an excellent understanding of ASD.

 

I think it can be very difficult to come to terms with the injustices we have to suffer and to add insult to injury we are expected to fight for our basic rights.

 

It is a very long time since I was having to fight for my son's rights to have his special educational needs met. It is a great worry that there is very little change, parents are still having the same struggles. The only big difference is the recognition and diagnosis of ASD's which has definitely improved. There is still a problem having their special educational needs recognised and met.

 

Nellie :wub:

Share this post


Link to post
Share on other sites

:o - Diagnosis at 19 (did you have to fight for a long time?) - Emma was diagnosed as 3 1/2 and Scott at 2 - I must admit I jumped on the powers that be with scott because I knew something had gone wrong. peadiatrician was reluctant to diagnose him but I insisted - mums know their kids. He fitted the spectrum like a glove. I am convinced his sister has AS (her diagnosis is on the spectrum) but she is higher functionining. She has a delay of about 3 years in her speech and language. When did you first notice something was wrong with your son if you don't mind me asking?

 

:)

Share this post


Link to post
Share on other sites

CaroleJ

 

With hindsight I noticed almost right away. He was a floppy baby, slept 6 hours between feeds. He changed when he became aware of people about 6 months, he then cried painfully, this lasting for many years. We first went to the GP when he was 18 months (our own GP was on maternity leave) I was deemed to be an over anxious mother. He was referred to a paediatrician when he was 2 1/2, she said he had learning difficulties. We put this down to his problems at birth. He struggled in main stream. I took him out of school for a year whilst I battled with the education authorities.

 

He was seen by a Consultant Psychologist when he was about 10, we asked him if he could be autistic as we had our suspicions but he said definitely not. I foolishly didn't investigate it further as I (wrongly) considered that a professional knows best.

 

It was mentioned to me by a social worker when my son was 19, I suspect if I looked in his notes it may have been written on them at some point, I would rather not know.

 

It has happened to some parents that they find out accidently that there children have been diagnosed but they haven't been told. I think ( I hope ) this doesn't happen so much these days. :blink:

 

I have managed to come to terms with the injustices, it hasn't been easy, and it has taken time. I have even managed to forgive professionals involved who made judgements which were wrong.

 

I hope this has helped you in some way.

 

Nellie.

 

:wub:

Share this post


Link to post
Share on other sites

:unsure: I can totally identify with your feelings that sometimes wrong - mum's know their kids. I have a real battle with my son's consultant (who also happens to be my daugthers) I told him what had caused my son's problems and also I strongly suspected my daughter's. He did not seem impressed at all. I insisted on the diagnosis for autism because my friends little girl had been diagnosed ASD (by him). He would not diagnose and referred me to another "ASD expert". Within 10 minutes she confirmed scott's ASD. This consultant really does not like me as I argue . Tthe side effects listed by the manufacuturers of MMR state neurological damage as a side effect amongst many others. I have asked for a MRI scan because Scott is not making progress and I feel that he may have brain damage. Again, talk about fight for something. Its only the fourth time I have asked him - his answer is "he did not think I was serious!" - things have gotten better for diagnosis but the fight goes on! It wears you down but you keep going for the sake of your chidren. I think you always feel guilt as a parent, because you think I should have fought harder!

 

Regards

 

CarolJ

Share this post


Link to post
Share on other sites

Carol

 

Guilt? I don't think I feel any guilt. Again it was a difficult thing to deal with. I know I made mistakes in the past, but at the time I believed I was doing my very best. You can't do more than your best.

 

Some people ask if I feel guilty because my son is in residential care, no, I don't. I know my son is being looked after by people who understand him as well as me, if not better. They go home for a rest, get holidays, pay, training etc. He has good quality of life, probably better than I could give him.

 

Thankyou for the chat, it's good to talk. :)

 

Night

 

Nellie. ;)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...