What were your loved ones' reactions when you got your diagnosis?

[jsilver256]

Turned out, my husband had suspected I was autistic for six months before my therapist made the suggestion.

I've told only one member of my family so far and he didn't receive it well.

 

[Outdated]

I came from a very dysfunctional and unsupportive family. When I was in my late 30s I still didn't have any real idea about autism, I knew the word and wondered sometimes if it applied to me but I knew almost nothing about it.

I was burning out and having a lot of problems, my whole world was collapsing, but when I tried to tell my parents that I thought I might have mental problems it was met with scorn and ridicule. I never broached the subject with them again, what would be the point?

7 years later I burnt out big time and ran away in to the rainforests to live like a wild man. I never bothered to have any contact with my family again after that.

 

[Misty Avich]

Mixed really. My mother would rather I didn't have a label but the social services forced my parents to get me diagnosed and threatened to take me away if they refused. So that caused stress for both my parents. I don't think parents should be forced into getting their child assessed for something that's not life-threatening if they don't wish to. I wish I'd never gotten diagnosed.

My father just brushed it under the carpet and still saw me as his daughter, not as a pile of symptoms with a label attached. My mother thought everyone and their dog should know about my diagnosis so told the whole family, extended family, friends of family, and then my whole class knew too.
This often made me angry and resentful of getting a diagnosis, because I was only mild/high-functioning so the diagnosis should have been revealed on a need-to-know basis only and otherwise kept confidential. I'm not blaming my mother or anything, as she probably thought it was the right thing to do at the time, but for a while I did feel like most adults (including teachers) saw me as a diagnosis instead of a normal child.

As an adult I have since moved towns and I have not told anybody who didn't know me as a child about the diagnosis, not even my husband. I just don't want it following me around for the rest of my life. But it is on my medical records, and I know there are laws in place about medical records being confidential, I still always fear that there's a tiny chance my medical records might somehow get revealed without my consent and then everyone will know.

Like when I'm filling out a form for something unrelated to neurological diagnoses and it asks me if I have Autism Spectrum Disorder (some forms these days ask that quite specifically for some reason) I don't tick the box. But then I fear they're going to phone the doctor, get my medical records up on their screen, and see the dreaded "Asperger's Syndrome" written probably in neon letters at the top, and then prosecute me for lying or even send me to prison, and put it all over the news so that the whole world will know my personal shame.

 

[jsilver256]

I came from a very dysfunctional and unsupportive family. When I was in my late 30s I still didn't have any real idea about autism, I knew the word and wondered sometimes if it applied to me but I knew almost nothing about it.

I was burning out and having a lot of problems, my whole world was collapsing, but when I tried to tell my parents that I thought I might have mental problems it was met with scorn and ridicule. I never broached the subject with them again, what would be the point?

7 years later I burnt out big time and ran away in to the rainforests to live like a wild man. I never bothered to have any contact with my family again after that.

I found your story in while searching older threads on alcohol. As terrible as it is, it would also make a great movie... hope your life is much better for you now.

 

[jsilver256]

My father just brushed it under the carpet and still saw me as his daughter, not as a pile of symptoms with a label attached. My mother thought everyone and their dog should know about my diagnosis so told the whole family, extended family, friends of family, and then my whole class knew too.
This often made me angry and resentful of getting a diagnosis, because I was only mild/high-functioning so the diagnosis should have been revealed on a need-to-know basis only and otherwise kept confidential. I'm not blaming my mother or anything, as she probably thought it was the right thing to do at the time, but for a while I did feel like most adults (including teachers) saw me as a diagnosis instead of a normal child.

I'm deaf and can't talk, so I know the isolation of being a "special kid" very well, followed by being a "special adult." Strangers talk down to me and treat me like a baby constantly. It's not all bad though, people seem quite inclined to go out of their way and help a deaf person.

My kids love movies so I take them there on weekends, it is nice and dark and warm with a blanket. The local movie theater has a quadriplegic working there. He is quite young and I suspect has some cognitive struggles, maybe even autism. Every time I see him, he goes out of his way to hold open doors, get me food, all that.

I think when I was younger, I would have seen that as shame, like I didn't need the reminder that I am so visibly handicapped that a quadriplegic feels compelled to help me. But, at my current age, I see a beautiful and kind young man who I can only aspire to emulate, and a beautiful act of humanity in helping someone else.

 

[Gerontius]

I think my dad was bothered as he said he didn't want me to let the diagnosis change me. He also thought, and perhaps to some extent still thinks, that it is something one can fight instead of something that is what one lives with.

Oddly enough we don't get along overly well.

 

[Outdated]

I found your story in while searching older threads on alcohol. As terrible as it is, it would also make a great movie... hope your life is much better for you now.

I've had a great life, although I was pushed in to a lot of decisions that most people would never make I also got to have experiences that most people could never even imagine.

Most important of all - I've had a lot of fun.

These days I'm on a full pension and living in government subsidised housing in a really nice area. I have no obligations and get to just do what I want when I want. I really am living the dream.

 

[Greening]

I did not have loved ones, when I got my diagnosis. I cut all ties with those who were supposed to be that, quite a long time before that.

 

[kriss72]

My daughter said something like, "I told you so", the spouse, "I knew you were strange", my mother kept quiet.

 

[GrownupGirl]

I think my mother was very glad and relieved that we finally had an answer to why I was so different and going through so many difficulties. This was in 2001 when Asperger's was still barely known to the public. She might have also felt guilty because for years she had scolded or tried to discouraged me from doing things that she thought was childish or not normal but actually helped me to cope with living in an NT world and it just made things worse.

But then again, a lot of things that most people do that help them cope or focus are actually quite normal are seen as a sign of mental illness.

 

[Misty Avich]

I'm deaf and can't talk, so I know the isolation of being a "special kid" very well, followed by being a "special adult." Strangers talk down to me and treat me like a baby constantly. It's not all bad though, people seem quite inclined to go out of their way and help a deaf person.

I hated being a "special kid with problems". Hated, hated, hated it. Having a social worker involved with the family, having to see an educational psychologist through school, having to attend several appointments when being assessed which meant sitting in a room of adults talking about me. It was all very distressing and daunting for me. I felt embarrassed, ashamed, and fed up too.

It's why I get a little resentful of Aspies my age (who grew up when Asperger's was known about) that didn't get a diagnosis until adulthood. It spared them from all those appointments, assessments, psychiatrists, in childhood. If I hadn't of acted out on my first day of school (aged 4) I probably would have slipped through the cracks my whole childhood like all the other female Aspies on autism sites who grew up post 1994. Attending appointments, assessments and psychiatrists in adulthood is probably different, especially if you've decided upon yourself to get assessed. As a small child I had no choice. I was forced.

It's why I resent myself for acting the way I did when I was small. How come other Aspies seem normal when they start school, why I had to be a disruptive brat that made the teacher cry?

 

[jsilver256]

@Misty Avich , I "see" the pain coming through your words. Can you help me understand your perspective a bit better?

Yes, being special kid sucks - I had two assistants follow me around all day, which is humiliating for a preteen/teenager - but it has very little impact on my life as an adult. And late diagnosed autism often comes as a result of other issues, e.g., substance abuse issues. Is it possible you are fixating without realizing it?

 

[Misty Avich]

I guess being diagnosed in childhood has its good points and bad points, and so does being diagnosed in adulthood. But I think if I wasn't diagnosed in childhood I probably would have had a more interesting life as a younger adult. If I wasn't diagnosed I'd probably would have just "got on with it". I had such a supportive family around me, that I didn't really need outside support and a stupid label. I know I would have done fine. Except at school where I might have fallen behind more, but then I probably would have got assessed for ADHD, which seems less serious than an ASD. People seemed to make more of a big deal out of ASDs than other disorders. For example my sister has learning difficulties, but my mother never said "I have two daughters, oh and one of them has learning difficulties" but she would say "I have two daughters, oh and one of them has Asperger's syndrome" then go all into what it means.

 

[jsilver256]

But I think if I wasn't diagnosed in childhood I probably would have had a more interesting life as a younger adult.

What does an interesting life look like to you? I mean, most autistics I know are shut-ins, myself included.

If I wasn't diagnosed I'd probably would have just "got on with it". I had such a supportive family around me, that I didn't really need outside support and a stupid label. I know I would have done fine.

I think that's a pretty tricky conclusion to make for a couple of reasons. First, the memories you have of yourself, were made at age 4, 6, 12, etc, with the emotional maturity and perception thereof. For example, I don't remember being overtly bad, but my mother kept my actual school records and I had clearly documented severe behavioral issues. These were blamed on my being deaf, but in retrospect, likely had AuDHD components.

Second, the way you word this, makes me feel as though you are seeing autism as nothing but a label and if you didn't have this label and then the autism doesn't exist, is that correct? I understand it is quite tough to live with the label, but I think very few late diagnosed autistic people can be considered "done fine" - they get the assessment because their lives are falling apart in some way.

 

[Misty Avich]

What does an interesting life look like to you? I mean, most autistics I know are shut-ins, myself included.

When I was eating my lunch the other day at work two female colleagues of mine were talking about when they were young and the fun they got up to in pubs and bars, and even though they're middle-aged now and couldn't live that lifestyle again, they still said how fun it was when they were young and that they didn't have a care in the world.
Me on the other hand, I was lonely, never been drunk in my life, never been clubbing, didn't "live", and was such an anxious, nervous wreck for my age.
Other people say they used to party all night then go to work the next day feeling okay. I feel weak and useless for never accomplishing that. I didn't even have a job when I was a young adult, but if I did I wouldn't have dared to go out the night before a shift. I seemed to have the sense of a 40-year-old when I was 20. While most will say that's a good thing, it still indicates that I didn't live the fun life like a 20-year-old should. I was a friendless shut-in with depression and anxiety.

But the Aspies I do know (not been diagnosed in childhood) all seemed to have lived the normal NT life when they were 20; somehow forming a group of friends to hang out with, living it out at clubs, bars and festivals, experimenting alcohol and weed, just like the vast majority of young adults.
Sitting alone in your room on your computer every weekend night at around age 17-24 years old is frowned upon in western society for some reason.

I think that's a pretty tricky conclusion to make for a couple of reasons. First, the memories you have of yourself, were made at age 4, 6, 12, etc, with the emotional maturity and perception thereof. For example, I don't remember being overtly bad, but my mother kept my actual school records and I had clearly documented severe behavioral issues. These were blamed on my being deaf, but in retrospect, likely had AuDHD components.

I have a really good memory so I remember a lot of my childhood. Obviously I don't remember much of being 4 and under, but I do have a few memories of how I started out at school being so disruptive. Apparently I was so "bad" that I had to be statemented, which led to all the assessments to see "what was wrong" with me - even though by age 5 I'd calmed down a lot and was able to just fit in socially, even though I was a highly sensitive child and needed help with catching up on my reading and writing skills, but there were a few other children with the same learning difficulties and they didn't need to get statemented to get some support in the classroom. In every classroom there's always about 5-6 children who need support catching up and so are often placed on the special ed table. But they had to go above and beyond with me and single me out and slap a diagnosis on me.

Second, the way you word this, makes me feel as though you are seeing autism as nothing but a label and if you didn't have this label and then the autism doesn't exist, is that correct? I understand it is quite tough to live with the label, but I think very few late diagnosed autistic people can be considered "done fine" - they get the assessment because their lives are falling apart in some way.

I just don't get how so many millennials go through childhood without being recognised as in need of a diagnosis even though their autism seems more severe than me.

I would feel much more relaxed if AS wasn't pasted all over my medical records. I always fear it's going to get revealed in some way without my consent, despite all these laws about confidentiality. Is it really 100% confidential? And say I wanted to join the army or something, I wouldn't be able to with the stupid diagnosis. Not that I would join the army but that's not the point. As confidential as my medical records are supposed to be, I still feel hindered by the diagnosis moreso than the disorder itself. I'd rather just put all my existing problems down to anxiety, depression, ADHD and OCD than autism, but I can't really because it's down on my medical records.

 

[Jumpinbare]

Surprise and skepticism, same as I had myself till I did a deep dive research on ASD

 

[NB79]

i am not diagnosed but, my mother ignores it a bit when i mention it, like yes it could be, but it doesn't change anything, and my dad just listen to me and says nothing, the pastor, said Bill Gates is supposed to have it, so it coudln't be that bad. The psychiatrist is not a loved one but says it could be, but is 'difficult to know', i feel i'm in a society where they don't give a damn about adult autistisc.
What's your opinion on those reactions?.

 

[NB79]

I've had a great life, although I was pushed in to a lot of decisions that most people would never make I also got to have experiences that most people could never even imagine.

Most important of all - I've had a lot of fun.

These days I'm on a full pension and living in government subsidised housing in a really nice area. I have no obligations and get to just do what I want when I want. I really am living the dream.

Here to have a little money as pension, you need to really physically or mentally disabled, i mean destroyed almost.

 

[jsilver256]

i am not diagnosed but, my mother ignores it a bit when i mention it, like yes it could be, but it doesn't change anything, and my dad just listen to me and says nothing, the pastor, said Bill Gates is supposed to have it, so it coudln't be that bad. The psychiatrist is not a loved one but says it could be, but is 'difficult to know', i feel i'm in a society where they don't give a damn about adult autistisc.
What's your opinion on those reactions?.

I think it's hard to know how a label changes unless you are the one experiencing it. I might have given it the "so what, you keep being you" treatment too until I experienced it.

I think there's also some worry about letting a label define oneself which is valid. I knew one guy who got diagnosed with Aspergers from a while back and immediately decided it meant he couldn't work anymore. As far as I know he wasn't burned out and was doing well at his job, he just didn't want to work.