Failed By The System?

[Reaper94]

Was I failed by the system?

 

Ive read several comments by people who say that they or their children were diagnosed with AS fairly young (pre-teens) yet I only got diagnosed last year when I was 15, after about 4 years of seeing a child and adolescant psycologist. Nobody at primary school or secondary school ever suspected a thing, though I had all the "symptoms" other people have mentioned.

 

So why did it take them so long?

[Beth_]

Was I failed by the system?

 

Ive read several comments by people who say that they or their children were diagnosed with AS fairly young (pre-teens) yet I only got diagnosed last year when I was 15, after about 4 years of seeing a child and adolescant psycologist. Nobody at primary school or secondary school ever suspected a thing, though I had all the "symptoms" other people have mentioned.

 

So why did it take them so long?

 

Some people are never diagnosed, many aren't until their adults and are able to make sense of it all themselves.

 

There can be so many reasons. There wasn't always as much awareness about AS, teachers are just that, not diagnosticians. Parents might not be aware of what is going on. My parents were told I probably had Aspergers and they chose to ignore it. I'm still trying to deal with my anger about that!

 

On the inside you can see everything but it might not be so obvious to people on the outside.

[Tally]

A few people do get diagnosed young, but many many people do go undiagnosed for a very long time. We have a new forum member who has recently realised he probably has Asperger's at 70 years of age.

 

The possibility of autism was raised by my school when I was aged 3 the first time. My parents took it up with the GP who said I was not autistic and then failed to pursue it further despite there being very obvious problems. I don't have typical autism though, and may not have been diagnosed at that time even if they had.

 

Teachers are not trained to spot autism. It's a bit annoying they took so long to spot anything at all and get you seen by the psychologist. The psychologist might have noticed something, but they are often trained to work with mental health issues and can have a slightly blinkered approach. I was seen by the adult mental health services without anyone noticing I was autistic - even when I raised the possibility myself.

 

It's understandable you feel someone should have done something sooner, but there is not always anyone to blame.

[smiley1590]

i was official diagnosed at year before you i was 14 years old you do feel angry ,resentful,bitter at failurings of the endless systems missing you and picking others up but suppose we are VERY LUCKY that wasn't diagnosed later on in life like 40's/50's as was bad enough being diagnosed when we were and you try and work out why it was the way it was why didn't anyone see it notice something stood out from crowd but suppose didn't have knowledge behind them like the professionals do today i been through G.P referal from there to general counsellor from there CAMHS and you do get annoyed fed up being passed around like some kind of toy ..... but i know people i speak to now on MSN facebook who officially diagnosed as a toddler i do bubble inside sightly due to FACTS so ovious the earlier spotted improved/better it can be to live with it accept but more left more deep hidden gets more difficult struggles /battles can become to face with it!!! and also being diagnosed age we was we had puberty to contend with isn't easy for anyone and hard enough to go through without being 'hit' in face with that kind of 'bomb' being put in front of you .... as you feel denied and like things could have been more positive better growning up if you known 'who the other half' 'missing you' actually was and not putting it the blame guilt anger everything all on yourself does have massive impact on self esteem /mental health in future so early diagnosis is so important to get 'right' or be picked up A.S.A.P when something does seem or fit exactly right and neat things don't add up become clear everything lost and confused and never get your childhood back of what you've have had 'stolen' 'robbed' through not knowing the truth behind situations identity .... makes you seem ungrateful to be moaning about the age you was when you was officially diagnosed but if you think could had better treatment displayed to you education system teachers stand out in my own personal situation .... our knowledge through our personal situations can lead greater understanding awareness

 

XKLX

[anewman]

I had quite a hard time, eventually being misdiagnosed schizophrenic and admitted to a psychiatric ward at 17 years old. Asperger Syndrome can appear somewhat like what is known as the Negative symptoms of Schizophrenia. I was pretty much forced (if you don't take it we can make you sort of thing) to take anti-psychotic medication I did not need, which gave quite bad side effects (especially when they increased dosage to well above maximum recommended as they saw no improvement). The doctor conveniently believed I was faking the side effects. The Schizophrenia label stuck for a very long time, and it did not help me in any way. It was not until later when I was about 20 Asperger Syndrome was mentioned, and having known I never had Schizophrenia I also rejected this new label - until a good few years later. Asperger Syndrome was almost a new diagnosis at that point in time and very few professionals knew about it. You have to remember some Psychologists and Psychiatrists are still pretty clueless when it comes to Autism and Asperger syndrome, but hopefully on the whole less so than when I was that age.

 

I have to say I wish I was diagnosed at 15, it would have made things so much easier to understand in my early life, and saved a lot of problems.

 

On the positive side, had I not been admitted to a psychiatric ward for a few years I would never have considered going to College and moving on to University. I left school without sitting GCSE exams due to the difficulties I experienced at school. But I have to say in relation to another post I started recently, fat lot of good it did in helping me get a job though

Edited December 1, 2010 by anewman

[Karen A]

I think it is also worth bearing in mind that AS is a relatively new diagnosis.In my area more children have been diagnosed in the last few months since a new team was set up to conduct asessments.Many of them are at secondary school.Perhaps in the next few years as awareness increases there will be fewer teenagers who reach 15 before eventual diagnosis.

 

Karen.

[smiley1590]

shame so much pain heartache and misery misdiagnoses judgements stereotypical comments are made before A.S is found discovered beneath everything 'physcially' seen with the eyes just upsets me alot sometimes to think why should we have gone through this!!! i always felt 'different' to others especially at school ....

 

XKX

[trekster]

i feel like i was diagnosed late because i was being blamed (and i still am)

for my behaviour by my parents. i got a diagnosis age 16 but not apology was

offered from the NHS or my family for "doubting there was more than PMT".

 

My family dont get ASD at all. Due to my ability to compensate to a certain

degree (which is now breaking down) my difficulties were hidden until my diagnosis

at age 16. i was also recovering from traumatic issues from my past at the

same time, i have never had my Aspergers explained to me and get doors shut in my

face whenever i try and seek help. im being told i dont have mental health problems.

[Bloodheart]

I'm going through diagnosis for Asperger's - I'm 27.

 

As a child I presented more like someone with autism, I was mute until 7, I had serious learning difficulties, my behavour was beyond 'strange' - I mean I really could not pass for NT and many would have said I was severely autistic - no one spotted it with me. Teachers are only now able to spot potential ADHA, where as ASD is a little more tricky to see and not as well known.

 

As it turned out I'm being rushed through the system now because it turned out my medical history showed asperger's was considered - this was revealing to me. Between the ages of 12-14 I was put into the mental health system as my school noticed I was struggling with social interaction within classes which was effecting my work (basically I refused to join-in - they didn't see any symptoms, they just saw me as falling behind or causing problems in the class by standing out against the norm of the rest of the class - if it was just symptoms of asperger's they'd not have sent me for therapy), at first asperger's was mentioned, however as they were psychietrists it was in their nature to go that route - they explored the possibility of social anxiety.

[Sally44]

Unfortunately late/later diagnosis are common.

The possibility that something was not quite right with my own son was raised by his nursery teacher when he was 3. I took him to the GP who said "if he has problems at school they will pick up it up". The Health Visitor was also refused access to the nursery to observe him!

His primary school did call me in 6 months after he started school and we began the referal process. But I am still angry about those initial years that were wasted opportunities. At that time my son was refusing school and I had to strap him into a buggy just to get him into school. If he had been picked up at age 3 that might have been so different. He was finally diagnosed with an ASD at age 6. And it is still a struggle now (I have just lodged my second educational appeal). It seems to me to be a neverending slog against people/organisations that simply do not want to meet the needs of mine or other ASD children simply due to the funding issues involved.