When the denial stops...

[szxmum]

Hi all

 

Going to try to get this down in words so please bear with me. I apologise in advance if my wording comes over as clumsy or offensive, it is not meant that way - I am just trying to communicate how traumatic the last six months have been.

 

 

Having a diagnosis of Asperger's Syndrome for ds at 17 has been the most tremendous shock and is almost like a grieving process - I can see myself going through the different stages of grief:

 

Denial

This has been an enormous stage for me to work through. We have been told for years by numerous authority figures (doctors, teachers, MH professionals, the list goes on and on and on) that there was nothing "wrong" and that ds would "grow out of it". For years, I waited for ds to "grow out of it" and turn into a "normal" NT child / teenager.

 

I feel like I have been brainwashed and it is only now that I am letting go that brainwashing and seeing things with clear eyes, from a new understanding and perspective. It is only now that I am seeing, really seeing, how lacking in social, planning, organisation and independent living skills ds really is. Yes, he is intellectually intelligent and achieved 10GCSEs but he cannot tranfer those skills into the world of work and they came at such a high cost to his mental health and well-being.

 

Anger

Anger - don't talk to me about anger. Oh yes have I been angry.

After all we (and ds especially) have been through, how can they just diagnose ds because he no longer "fits" into mainstream. With hindsight he was "missed", he should have been diagnosed and supported years ago. They were the professionals, I believed them, I waited for ds to "get better" and the "problem to go away". I knew nothing about autism. How dare they just diagnose and then leave us to get on with it.

 

Bargaining

Yes - been through this stage as well. This is like - if we do this, ds will "fit" into this environment; if we try that, ds will be happy; if I phone this person, he/she will have all the answers and will be able to "fix" the "problem"

 

Depression

This comes along with exhaustion and the realisation that even if the services were out there and available, ds does not "really want" to access them. People mean pain to ds, why keep putting your hand in the fire when it hurts. There is also the realisation that your child who there was nothing "wrong" with, may not reach independence and may need long-term care. There is also the realisation that "normal" parameters of development are out the window, no-one can give you a timescale and you cannot predict what will happen, when.

 

Acceptance

I'll tell you if / when I get there. For the moment, all I can post is that my son needs a carer, he is not independent and I have accepted this is NOT going to go away.

 

If you are still reading - thanks. Don't know if this will ring any bells with anyone but it's helped me to waffle on for a while.

 

Szxmumxxx

Edited October 29, 2009 by szxmum

[jb1964]

Hi Szxmum,

 

Yes your post summed up how I've felt along the way - my daughter was diagnosed with ASD at 12 although other developments have now linked all her difficulties to a gene alteration. She had been under a Paed. since she was 6 mths old (for failure to thrive) - he saw her every 3 - 6mths until she was 11 - he did test after test and kept assuring us that she was really just a stubborn, strong willed little girl who would bow to peer pressure eventually - and that covered all her difficulties including constipation and eating which he said she controlled - which we've now discovered fall into the genetic disorder and I feel angry and let down all over again.

 

Take care,

Jb

 

 

[bid]

<'>

 

I think all/most of us parents here have been through this grieving process. I know it doesn't make it any easier but from what I've read it's completely normal.

 

Bid <'>

[LicklePaulie]

Yes, and there are many parallels to the way a "late" diagnosis (42yo in my case) can affect an individual. I suppose the only reassurance I can offer is that some (possibly many) individuals manage to survive and, in some rare cases, even thrive into and through adulthood even without the limited support available... And don't forget that Autism Act which should at least increase awareness and availability of services in the future.

 

L&P

[trekster]

i was also diagnosed with aspergers in my teens. Only 1 year before your son age 16. It was after school and even the examiners weren't going to make reasonable adjustments for me. i had a breakdown 2 years later passed my A levels in 7 years and its taking me nearly another 7 years to get up to Uni Bsc standard.

 

Aged 27 i moved out into my own place. ive been here over 2 years now. i get 10 hours of home support a week. Without attempting university i wouldn't have even dreamed of moving out.

 

i will be asperger for a long time possibly the rest of my life and ive accepted that. i wont accept i will have mental health side of aspergers though and im trying to tackle it head on.

 

My mental health only improved after 10 years when i finally decided "either i try gf/cf or im going to loose my mind" (literally). Further research mentioned supplements for me as well (including depression/anxiety/sleep ones). ive since removed aspartame, msg and benzoates from my diet.

i react to most meds even for minor things, i was in floods of tears on anti fungals for a toe infection.

 

Alexis

[Sally44]

Eventhough my son was finally diagnosed at age 6, there had been concerns from the age of 2+. I took my son to the GP to be told that 'repeating words/phrases' is 'normal', as is spinning, giggling for no reason and talking to yourself whilst walking in circles or pacing up and down the room. The private nursery teacher who also raised some concerns was over ridden by the owner of the nursery who re-assured me that 'he is just a typical boy'. The Health Visitor assessed him as meeting his milestones although she had some concerns regarding social interaction and told me to 'take him to toddler groups' - which I did!

And some days he did seem okay. But at other times, usually social things such as childrens parties etc, I could see that there were big differences and sometimes major problems for him.

My next door neighbours (both primary teachers) told me they were concerned that his speech was not as it should be for his age and that he would struggle in school. Again I went to the GP to be told that if there were any problems that school would pick them up then. So I just trusted and believed in that. With hindsight I know that we missed out on years of input that could have made a difference in those early years.

Before he started school I raised all my concerns with his reception teacher, who re-assured me that he sounded 'fine'. Only to be called in 6 months later to say they had major concerns about him and wanted to refer him for assessments. That took a total of 18 months, and then he got a diagnosis of an ASD by the paediatrician and we were given a leaflet about ASDs and the telephone number of the Parent Partnership.

Nothing prepares you for getting that diagnosis. You know something is not as it should be, but you don't want to have to accept a diagnosis that has lifelong implications. And as you say, there is no manual out there, no real knowledge of what is in the future. We are parents who want the best for our children, and therefore we should not be hard on ourselves when we have raised concerns only to be reassured by professionals that everything is okay. That is what we want to hear, and afterall we are not the professionals - they are.

And I think many do go through the grieving process because you have lost the expectations of the future that you assumed was what your child would have. And I think the later that happens the longer you must have lived in that place where you felt something was not quite right, but kept being re-assured. To then find out that your fears were true feels like such a betrayal by the system.

But what kept me sane was understanding that throughout the process pre and post diagnosis my child was the same person. Just my expectations and assumptions had had to change. And you don't know what is in the future. Almost definately it will be different, but that doesn't mean it will be bad.

But yes I felt very angry for well over a year. And at the same time I felt total grief. And it was like a merry-go-round when I would have good days and then something would happen and I would just disolve into a heap sobbing, or would get so angry that I would scream or break things. In contast my husband did not feel like that at all. And I still have times when I get extremely angry or very emotional. But mostly our days are good at the moment.

For me I also had the knowledge of having been through the process with a sibling who has learning difficulties. For a long time I had been afraid to have a family incase I had a child with similar difficulties because I know what my parents and the whole family had gone through to get her to the stage where she is living and working independently. And even now that is a very fragile situation which could change.

Then I found out in my late thirties that I had fertility difficulties and actually need help to conceive. To then find out that one of my children was autistic and that there were thought to be genetic implications just added to the guilt. Maybe I hadn't been able to conceive because that was how it should be and I should have just left it at that. It also added to my anger and guilt because I had been reassured by doctors that there was no additional risk in my having children.

Post diagnosis of my son, I then went on to find out that one of my parents had Global developmental delay and had left school with just basic reading and writing, but had somehow trained as an adult to be a computer engineer and had been exceptional and even received national awards. My own mother has traits of AS. Both my brothers also have traits and one of them has mental health issues as well. Suddenly you see your family in a totally different light.

 

So i'm sure many reading your post are nodding their heads. And you just have to give yourself time and find your own way to let the emotions out. You will feel angry for a long time that these difficulties were not picked up and identified much earlier. I even went back to the initial GP I saw and reminded him of the little boy he said was 'fine', and told him he had received a diagnosis of an autistic spectrum disorder and that the symptoms I had told him about had been identified as echolalia and sensory integration disorder. I just felt that too many 'professionals' had not really listened to me, and that I had just faithfully believed everything they told me. I think that feeling of being let down by the system is what turns so many parents into 'experts' in both ASDs and the SEN process, because they no longer take anything on trust, they want to find it out for themselves.

[szxmum]

A big thanks to everyone for all your replies.

 

 

Nothing prepares you for getting that diagnosis. You know something is not as it should be, but you don't want to have to accept a diagnosis that has lifelong implications. And as you say, there is no manual out there, no real knowledge of what is in the future. We are parents who want the best for our children, and therefore we should not be hard on ourselves when we have raised concerns only to be reassured by professionals that everything is okay. That is what we want to hear, and afterall we are not the professionals - they are.

 

And I think many do go through the grieving process because you have lost the expectations of the future that you assumed was what your child would have. And I think the later that happens the longer you must have lived in that place where you felt something was not quite right, but kept being re-assured. To then find out that your fears were true feels like such a betrayal by the system.

 

But what kept me sane was understanding that throughout the process pre and post diagnosis my child was the same person. Just my expectations and assumptions had had to change. And you don't know what is in the future. Almost definately it will be different, but that doesn't mean it will be bad.

 

 

I could relate to so much of lot of what you posted Sally. I have spent so many years raising my concerns to all these different professionals only to be relieved to find out there is "nothing wrong" with ds. So to find out 17 years later that I was "right" all along has knocked the feet out from under me - there is so much guilt and grief and anger - how could I be so blind? how could I have lived in such denial? - but all I did was to trust the professionals.

 

Loss and changes of expectations for the future - this is exactly where I am now. I have let go of my expectations of the future I expected ds to have - I have accepted this is not going to happen, grieved and let it go. I have also had to let go my own future expectations - full-time career to full-time carer is a BIG change.

 

You are right, it is my expectations and assumptions that have to change. The future is going to be different, it doesn't mean it is going to be bad, it is however completely new and unknown and that is tough going.

 

Thanks again everyone, Szxmumxxx

 

[Martin Howe]

Yes, and there are many parallels to the way a "late" diagnosis (42yo in my case) can affect an individual.

Hmm... I can relate to that. At nine yo with a good IQ but few social skills, the child psychologist apparently said of me, "Oh he'll just grow out of it"!

Shows how much they knew This was in 1974, so I guess the positive message is how far society has come. Didn't help me, though

 

[szxmum]

"Oh he'll just grow out of it"!

 

Some professionals have come a long way Martin - only some.

 

I was told by a lady psychiatrist April 2008 that Asperger's was the current fashion and that my son was just shy and that he'd grow out of it .

 

There is still a LONG way to go IMHO - our experience has shown just how far we haven't come in terms of knowledge and acceptance.

 

[Sally44]

I would just say that you were not 'blind' or 'in denial'. You believed what you were told. Now that you have found that you were right all along, it will mean you do have a different approach to professionals. You will not just take anything they say on their word. You will want them to explain and justify their position and put it in writing if they are so sure. (and I found it amazing how many professionals could give you a definate 'verbal' answer, but as soon as you ask for it in writing it suddenly becomes a different thing and they don't want to do it). You will go back if you are not happy. You will push for further referals or assessments and you won't rest until you feel satisfied that everything is being done that could be done. So that will work in your, and your son's favour.

You feel totally let down for the past XX years. That is going to take some time to come to terms with. Sometimes I would even say to professionals 'I'm sorry but after 3+ years of being told everything was okay with my son, I now find I was right all along and he now has a diagnosis of an ASD, so don't expect me to just go along with anything you say or recommend'.

And in the future, it can be a bit daunting to find that you actually know more about how the ASD affects your child than the professionals do. But working together things can come good. Don't let this crush your confidence. Let it build your confidence because you were the one that was right.

[Sally44]

Someone sent me this poem, which did help me at the time. And the finality of "you've landed in Holland and there you must stay" is very powerful.

 

Welcome to Holland

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

 

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

 

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

 

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

 

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

 

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

Written by Emily Perl Kingsley

 

 

 

[szxmum]

Thank you Sally :crying:

 

 

<'>

Edited October 30, 2009 by szxmum

[Martin Howe]

I was told by a lady psychiatrist April 2008 that Asperger's was the current fashion and that my son was just shy and that he'd grow out of it .

Hearing about that comment in 2008 (!) from a so-called professional really makes my blood boil. I'm really sorry you had to go through that; unfortunately, in many professions - the medical profession sadly included - conservativism rules "because we've always done it that way" and some would rather chuck themselves off a cliff than admit that they have been wrong, even if it wasn't necessarily their fault that they were wrong.

 

@Sally44:

Hmm... a "horrible, disgusting, filthy place, full of pestilence, famine and disease" is exactly how I would describe being an Aspie before it was known about But I have to admit, it was actually a quite uplifting poem (normally I would cringe at those)

[Sally44]

I had the same thing said to me by the Head of Commissioning at our LEA. I was there as part of an on-going complaint I had had about my sons needs not being met in school and a lack of ASD schools in our area. They did apologise to me for how they had handled 'our case'. But that is another story. What she said was that "10 years ago it was Dyslexia and we used funding to support those individuals, now it is ASD and we have to take divert money from other things and put it into this area - ASD is the new Dyslexia". Actually, I said, my son has both.

[szxmum]

 

Someone sent me this poem, which did help me at the time. And the finality of "you've landed in Holland and there you must stay" is very powerful.

 

 

I know these types of poems aren't for everyone but I have been thinking about this poem all last night and this morning. I could really relate to this poem, it spoke volumes to me and I've woken up this morning feeling a lot more settled and relaxed.

 

Apologies for the upcoming overload of imagery

 

I hung onto that plane going to Italy by my fingertips for soooo long - I exhausted myself trying to keep my son happy in school AND me in my new career.

 

When I finally landed in Holland with a bump, I exhausted myself even further running around in a panic learning our new language, knocking on doors trying to find other people who spoke our new language, trying out new experiences to try to find a place where ds would fit.

 

Now, I've run my self to a standstill - I'm burnt out.

 

I've learnt the new language, I've made first contact with people who speak the new language, but there is no "ready-made" new life just waiting for us to step into. I now find that I've got to build that new life one piece at a time.

 

I'm learning that I have to stay away from people who are flying to Italy because most do not understand why we cannot fly with them. Some are critical and judgemental telling us it can't be that bad and we are not trying hard enough to get on the plane. The remainder believe there must be "someone" who can fix things so that we can continue on the plane to Italy.

 

So....

 

Here we are in Holland and here we must stay and here's to building our new life one piece at a time

[lisac]

wow, put so well

[pearl]

szxmum <'>

I think many of us can identify with your eloquent post.

 

JP was dx'd at 5 - but I too was flagging up things I was noticing with the professionals, & I too was royally fobbed off time after time - until he started school, and finally someone (wonderful head teacher) took me seriously. If he hadn't, we'd have lost more time. I regretted the couple of years we lost - how much more frustrating it must be to wait years & years for a dx when you've known all along that he wouldn't just grow out of it.

 

Onwards & upwards though - your lad has his dx now, he has a great supportive mum, & you have a great supportive place here where peeps understand

Edited October 31, 2009 by pearl

[Martin Howe]

...

I've learnt the new language, I've made first contact with people who speak the new language, but there is no "ready-made" new life just waiting for us to step into. I now find that I've got to build that new life one piece at a time.

...

etc

....

Cool, couldn't have put it better myself - can well relate to that as a lot of my life right now is exactly that; there are a fair number of late diagnosees here and it applies as much to us as to NT parents!

[szxmum]

Thanks to all who have joined in this thread. I didn't expect it to run like this. You all rock

Edited October 31, 2009 by szxmum

[Mum of 3]

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

 

This is what has been making me feel so upset for the last few weeks. I'm sick of hearing about BL**DY Italy!

[Sally44]

With a president like Berlusconi i'm not surprised.

[lisac]

Hehehehe Sally , flippin great !! , x

[Sooze2]

Someone sent me this poem, which did help me at the time. And the finality of "you've landed in Holland and there you must stay" is very powerful.

 

Welcome to Holland

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

 

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

 

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

 

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

 

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

 

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

Written by Emily Perl Kingsley

 

This just made me cry! I feel I want to send it to freinds and family who just don't understand so I can't discuss anything with them.