Tag Archives: autism late diagnosis

Autism: A Year After Diagnosis

June 2nd, 2016

A year from the date when I got my diagnosis of Aspergers. A year from the time when I went beyond talking about Autism with my son, and began to share it with others. A year of having my heart pound as I shared this ‘secret’ in fear of how others would respond.

And they all accepted. The only question on my diagnosis arose from my mother who said, “We took you to the doctors. How is it they didn’t see it?” It wasn’t that she didn’t believe, but that she wondered how it had been missed.

Autism wasn’t something being diagnosed when I was in school, however, and Autism in females was even lesser known.

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For me, this diagnosis gave… validity??? to the ‘difference’ I had felt all of my life. When I was a child – and I have since read that I was not the only one – I literally thought I had come from another planet. It wasn’t just that I felt different, I was convinced that I was different, and that the only explanation to this was that someone had abandoned me here.

I spent many nights of my childhood begging for them to come back and get me, and bring me ‘home.’

My diagnosis gave me words that I can use to express to others why I am so different, and why I can’t be like them, and why I so often fail at even the things they are standing behind me rooting for me to succeed in.

Being diagnosed with Autism, for me, was like having the chains that had bound me all of my life suddenly disintegrate. It isn’t that my diagnosis changed the person that I was, but instead it provided me with the freedom to shed the mask I had been unsuccessfully wearing much of my life, and begin to allow my ‘real self’ to shine through.

It was a strong wall I had built around myself, though. A wall to protect me from those who would attack, and torment, and constantly remind me of how I failed to live up to society’s expectations of me (even in gentle, friendly voices.) A wall that I could actually see, though could never break through on my own.

Likely it will take a while to get that wall down, and likely there will still be people on the other side that will blame me for not being ‘like them.’ But with my diagnosis, the light has started to shine through. Sometimes I think, “Maybe I can survive out there. Maybe I can be myself, and still be accepted.”

And whether it takes months, or years, or the rest of my life – I know that is the way I am supposed to go. Take down the wall, and let people in.

And for all of these reasons and more, I am grateful for, and not ashamed of, my Autism diagnosis.


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Getting My Diagnosis

As this blog is supposed to be my story, I suppose that I should share a little bit about myself.

In December of 2014, after years of consideration, I finally built up the courage to ask my doctor for a referral to be assessed for Aspergers.  I never go into anything without a lot of thought and research, so by the time I got to my doctor, I knew what I wanted to say to him.  I brought with me 3 pages of notes (a small number for me – but then I did write them on my spare time at work that morning) and as much courage as I could find.  I was shaking, and could hardly think.

Several times I almost backed out, but I had come to the point that I felt it was absolutely necessary to get help.  I had several near meltdowns in the week before I went in.  I nearly quit my job, and left my husband, all because he asked me to get gas in my van before I went in to work.  It was out of my routine, and I just couldn’t do it.  There were other meltdowns over schedule changes, sensory issues, detours in my normal route to work, food, and other things.  These upsets happen frequently with me, and it is difficult for me to express to those around me why they are happening.

I am a very quiet person, and most of the time other people do not know how much I am suffering inside.  If I can’t get away to my own space, however, I cannot hide the battle that is raging inside.  People don’t understand, and being verbally challenged, I have not been able to adequately explain.

Finally I went to my doctor.  I told him about my extreme sensory issues, my difficulty forming friendships, my struggle to connect with other people.  Even now, I watch groups of people (frequently at Church, but also at my work) and even the preteens are able to interact and connect better than I can.  Much better.  I told him how I talked on time, but that I didn’t speak.  I could talk.  I didn’t.  People thought I was shy, but I am not sure that was an accurate description.  I had the words in my head, I just couldn’t figure out how to get them out.  There was so much more, but if I write it all here, this post will be too long.

I worried about what my doctor would say.  I worried about whether I would be able to express myself well enough to finally get the help I’ve known that I needed since I was 6 years old, but couldn’t ask for.  The help I tried to get at 17, at 21, and multiple times later, but did not get because I couldn’t talk.  This time I wrote out my notes, and this time I spoke.

It was a “yes” right from that appointment.  My GP said yes, and referred me.  My psychiatrist said yes, and got me counseling.  Four more times since then I have received a very strong “yes” for my diagnosis, and have been told I present as having a very severe form of autism.  They did not say high or low functioning, only severe.

Finally I am getting help.

I am thankful to be getting help, but after 38 years (32 aware of my ‘difference’) of being undiagnosed, teased, yelled at, abused, cast aside… I have some extreme challenges to overcome.  As comorbid disorders with my autism, I have also been diagnosed as having a severe anxiety disorder, social anxiety disorder, and depression.  This along with Post Traumatic Stress Disorder due to my childhood, another trauma I will speak of at a later date.  There is much to work on.

Nearly two weeks ago my psychiatrist told me she didn’t want me working at my job anymore.  I was having frequent daily panic attacks, very strong anxiety, and was often frozen and hiding in fear while at work.  She was right to take me off on leave.  I knew the signs, and knew I would meltdown and sabotage any day – I was always at the edge.  I had been in that place so many times before.  Since the beginning of grade 9 I haven’t been able to hold together in one place for longer than a year (and maybe keep that meltdown silent for another 6 months if that environment allows me to be alone and hide.)  I wanted to keep working, but I couldn’t do it.

So now I am off, and my panic attacks have stopped.  I am still extremely anxious (hopefully the medication will start helping with that soon) but I am not panicking.

I am worried about income.  I am very worried about what I am supposed to do after, as my psychiatrist doesn’t want me working with people – but all they can suggest are manual labour jobs (stocking shelves, and cleaning peoples houses) those jobs I know would be worse. 

Truth be told, I am so much happier at home.  I have been busy organizing, cleaning, taking care of my animals, talking to my son, and writing a lot.  I feel fulfilled in this position as I never did working.  If I could stay home and be a housewife, I would be content.  The fact is, though, we need my income, too.  It is a stress beyond what I can express.  I have no solutions.  I do not balance both well.  If I work, my home is not taken care of, and I have no desire to socialize or even talk to my husband.  If I stay home, I live much better, but stress over the income.

I don’t know where to go from here.


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