Tuesday, February 26, 2013

Falling between the cracks - #Aspergers and #MentalHealth

I just finished reading an article in the Ottawa Citizen. They had a multi-part series about Autism, and one post was about Adult Aspergers. The whole article is an amazing but difficult read about the story of one woman's battle with "the System" and her family's struggle to get her the proper care that she needs.

However one paragraphs really stood out when I read it, and immediately I identified with it, and felt that this was something I needed to write about.

"Currently, developmental disorders, such as autism, fall within the subspecialty of child psychiatry and are not part of a psychiatrist’s general training. That has led to a shortage of psychiatrists who are trained to recognize and treat the mental illnesses that often accompany autism in adults, says Dr. Peter Szatmari, a specialist in autism and head of the child psychiatry division at McMaster University.  
To make matters worse, many of the existing dual-diagnosis services are for adults with an intellectual disability, defined as an IQ below 70. That leaves people with high-functioning autism or Asperger’s ineligible for many specialized services."

This has been a big problem for me. I have been bounced around the mental health alphabet tree as one health care worker after another has applied YAD on me - "Yet Another Diagnosis".

As a kid, who was gifted and hyper, I was given Ritalin, which just made me crazy hyper. I was institutionalized for a year when I was 10, as they suspected I may have schizophrenia because of the way it would seem that I would "escape" from reality into my own world.

As a teen I was diagnosed with Tourette's and ADHD. From then on, I associated my repetitive gestures like my foot stomping, my rocking, my finger tapping, and the fact that I always had a song in my head (which would sometimes come out in a hum, or a whole song) as part of my Tourette's.

I saw so many shrinks and social workers that I just got frustrated with the whole lot of them until the last few years.

I never really fit in anywhere growing up, and there were times that I would be extremely depressed and withdrawn, while at other times I would have the persona of being the life of the party, the guy with the pun, or the good joke. It was a very lonely time for me.

As an adult I went through a deep depression after my first marriage ended after 3 years - I was only 27. I look back and see a lot of difficulties my first wife probably had dealing with me. She too was too young or mature to be able to handle someone so - different.

I also had difficulties dealing with people and bosses at different jobs. One boss told me once that many times after I did something he didn't know whether to fire me or give me a raise. I sort of just did things because I knew that I was right and it needed to be done. I had lots of interpersonal issues with my coworkers, and I just didn't get it when people would say something, and I would find out later they meant something else.

After having lots of frustrating times working for others, I started my own business, and ran it for about 5 years. It was fun, exciting and challenging, but I still would get into binds with my clients about their expectations, and things that I thought they needed or meant, plus also a life long issue that I had with trying to talk with people when I think they are upset with me.

I got married a second time, to the wife who is such an amazing blessing to me now. However the last 9 years have been really challenging for us, and especially for her as we have tried to navigate our communication skills together pre-diagnosis. We have hit some major rocks during this time, including a year long separation that ended this past fall, that has shaken us up.

I would go through great times while I was working, and then hit severe lows when I was fired or lost a contract. There were tremendous ups and downs. And then five years ago I got really sick. I had a severe bout of prostatitis that wiped me out. I couldn't work for almost 2 months and was let go from a contract I was on. I got a bit better so I started a new business and hired a few people to help me do the work. Then my shoulder popped out, and I needed more help and was put on more pain medication.

My mind was getting away from me with the narcotics that I was on, my body was failing fast, and before long I was in a wheelchair, then a stay at a rest-home because my wife couldn't look after me a 2 yer old and a newborn at the same time. My clients were leaving me as I was making foolish decision after decision trying desperately to keep my business going.

And then my business ended.

Now for the last 5 years I have been mostly unable to work, suffering from several medical issues, including fibromyalgia that I had only just been diagnosed with late in 2011, and much mental health issues. I have in these last few years seen psychaitrists that have told me I have Bipolar; I don't have bipolar; all I have is ADHD; you don't have anything; your not depressed; your depression is only because you are suffering from Fibromyalgia; You are narcisist. Argh!

Then this past Christmas, my lovely and sweet wife tells me that she really thinks I could have Aspergers. One of my daughters also has a diagnosis of Aspergers and I have been finding so many similarities between her life and mine as a child. I understand the struggles, the behaviours, the not quite fitting it, but I am going to do things my way kind of mindset. So I looked into it. Went onto many forums, took many tests, rated highly likely on all of them. So I figure that she is probably right.

In the last 2 months I have been having a harder and harder time dealing with life and the day to day struggles. I have been trying to come to grips with both a very painful time physically. I have lots of pain at night, so I can't sleep well.  I don't sleep much, so I have pain during the day... What a cycle.

Everything came to a head a month ago when I just couldn't seem to deal with the emotions and lack of self-control, the increased pain and lack of  sleep.  I was very agitated from seeing my ex-GP's clinic psychaitrist who told me that all the previous psychiatrists I have seen were quacks, and their diagnosises were all wrong.  I was told to get off all medications, and then learn to deal with it.

I desperately wanted help to get a handle on things.  So I told my wife that I was having a severe mental health crisis and she took me into our local hospital.  There I was able to speak to a psychaitrist who confirmed my wife's theory that I had Aspergers. He also suggested that it might be good for me to be admitted to their psychiatric ward for evaluation, and a time for me to de-stress.

I won't go into too much detail about my time there, but I got a full psychological evaluation done, I learned how to breath to lower stress, and I was for the most part extremely bored or agitated.  In the end I was told that I would be ok dealing with my existing GP and psychaitrist, and there was nothing else they could do for me. They felt that the major issue I had was my chronic pain, and that was causing my depression.  The other frustrating thing was that none of the doctors or nurses had any experience diagnosing or dealing with an adult wuh Aspergers.  This is what led me to write this whole long post.

So, here I am 4 weeks later, my stress level has gone down, as I have been poring myself into writing in my different blogs, and talking over the net with people who get it.  I don't think psychiatry is going to help me now anyways, but at least I have had a diagnosis.

This blog post should be my answer to people asking me how I am doing. :)

I would like to be able to provide some warm fuzzier about my journey, but I dealt with that in my last post, but I will add a few.

  • I have an amazing wife who has to deal with me and is managing to keep sane and loving me.
  • I have sweet kids each with their own gifts and challenges that I need to remember.

  • I am beginning to get help this year and real diagnoses for the real acute issues I have

  • Not all doctors suck, but it is hard to find the ones that don't.

  • Fight for your health! You can get to know your body, and find out why certain things don't work as they should. The internet opens up the possibility of having cognizant conversations with medical folk. You shouldn't need a degree to ask questions.

  • Learning to breath slowly is amazing!

Thanks for sharing my journey! Feel free to leave feedback, or share your story!

5 things I have learned from 5 years of being sick

I was reading a blog post called 11 tips learned from 11 years sick that really struck me as how accurate it was for me.

Some of the points that resonated with me were:

  • Becoming chronically ill begins a grieving process. Let yourself grieve.
  • Don't worry about how other people see your illness. They aren't you.
  • Don't worry about not working. You are working, whatever the little things you are doing is work.

So in reflection, here are my 5 things that I have learned from being sick over the last 5 years.

1. Do whatever little you can each day. It matters.

When I first became sick, during that first year when my health and mind were at its worst, I dreaded each day, and I had in my mind that I couldn't do anything. So I stayed in bed a lot of days, and didn't try to get up and do much at all. Pain was everything, and my life was all about pain. I didn't try to do much, because I didn't think I could do much, and I was frightened that doing anything would cause me even more pain.

Eventually that thinking faded, and with this second round of pain that I have been having in the past two years, my mindset has changed. I will get up every day. It may be later, but I will get up. I will try to do something around the house, even if it is only one thing. I will try and spend time with my family, even if it is only during meals and between breaks. Doing this has given me motivation, and a much healthier mind.

My body sucks. I don't.

2. Enjoy each success. There will be bad days, but there will also be good days.

Is the glass half full or half empty? If you were the type of person that sees it as half empty, you would look at chronic pain by saying "Oh, I have so many bad days, they are just so rough!"

I was like that, and sometimes succumb to that type of thinking. What is important to remember is that there are good days. They may not come by that often, but they are there, as gentle reminders of hope. They may be whole days, they may be just a few hours. But they give strength to your heart that you will get through this.

3. Perseverance brings character.

I wish I could say that I had a solid character now that I have been going through this. That would be a lie. However I have learned lots about humility and grace, when you are stripped of everything you thought you had - health, work, sanity, finances and need others to aid you in almost everything you do. I was a very proud man before I got sick. I was very full of myself.

Now, I am still learning, but having faith in God has allowed me to let go, to breath, to be myself, while my body is not healthy. I am more than my illness. My disability does not define me anymore. I am disabled, but I am not my disability. There is still more that I can do, even though I can't do all that I used to do before.

I can and will persevere!

4. Take time to be with your family. They really need you, and you really need them.

When I first got sick, I was hyper-sensitive to everything. sound, touch, smell, lights.  I didn't want anyone around who could make things worse than it already was.  It made it harder for my wife and kids to understand me, or to love me, because I put such a protective shell around myself.  But I was lonely, and so were they.

This second go round, I still need to take breaks to isolate myself a bit, but I try really hard to rest around them, instead of away from them, so that I am present, while still getting the rest that my body needs to heal, or recuperate.

I was a real jerk when I was first sick.  My personality went for a nose dive.  Thankfully, this time I have learned some of the hard lessons, and I am trying to be present in my family's life. My daughters need to be hugged and cuddled.  My wife needs a touch on her arms. They all need to see and hear and touch me.  I need to be present.

5. This too shall pass.

This doesn't mean that your illness, or pain will suddenly end some day, because it most likely wont.  What it means is that this struggle, this pain, this moment's difficulty will pass. It will end. You will be able to catch your breath. Just remember to breathe during those moments, however long they last. Rest. Recuperate. Recharge. Relax.

You need to take in those moments of seeming normality, as it breathes hope and life into a weary body and soul.

I can't say I live these every day, but I am reminded of them often as I face my life with poor health and chronic pain.

I hope these points make you think, and help you if they can.  Please leave me any comments or feedback, or even tell me your story.

Thanks for reading!

Monday, February 18, 2013

An #Aspie dad to #ASD kids

Our family's journey through Autism began 10 years ago with the diagnosis of Autism with my oldest, my only son. I knew, I KNEW, that he had autism. Little did I know then that I know now about how life with him would be.

I knew that many of the dreams that you have of how kids should grow up would be different, but I really did not know how it would be. My vision of the future was empty, not without hope, but without a framework.

Fast forward 10 years, when he is now about to turn 14! (I am old!). He has learned and done more things that I could have imagined he would back then. He still has challenges, many of them, but he is funny, charming and contains an encyclopedic knowledge of the things that he is really interested in. He loves computers and video games, and we connect most when we talk about these things. He is very smart, and when you give him time, he will display his vast knowledge and understanding of things.

He is in high school, where he is finally getting the supports he needs to be able to function well in a regular class. His elementary years were full of schools telling us problems they had with him, we would suggest ways that they could use to resolve them and they would patronize us by pretending to listen. We'd them get calls a week later stating they were still having the same or worse problems. We'd ask them if they did the things we'd suggested, and they would say "no, we can't do that, or we'd have to make all kinds of changes!"

He has been much better in high school. Next year he will be in senior high school, and with individual classes instead of staying with his classmates all day. Sigh... I hope he will do well with assistance there.

Why am I thinking of all this now, when I intended to write about his Aspie sister? I guess it is because his birthday is next week, and I am thinking about him. I haven't written too much about him anywhere until now.

My wife and I were talking about the changes that are coming in DSM V, with regards to the spectrum. I guess I feel the same as a lot of other Aspies, that lumping Aspergers together into ASD with all other diagnoses on the spectrum, just doesn't make a lot of sense.

My son, who has high functioning autism, and my daughter I has Aspergers, are very different. My son needs guidance a lot in order to be semi-independent, but still for the most part stims and lives inside his head. My daughter is full of life, is very interactive and adventurous, and needs guidance to pull her down from the clouds to see the safe paths for things.

My son will most likely grow up needing assisted living arrangements, and he is probably going to be somewhat dependent on us or others all his life. My daughter on the other hand will live independently, but will probably rely on us or others as she faces challenges in a world that just doesn't think the way she does. Heck as an Aspie, I know that from first hand experience!

So, there is a real difference between high functioning auties, and aspies, and I am hoping that these changes don't eliminate the need for help for Aspies, and that rather we look at the spectrum as just that, people with similar issues, that have individual strengths and needs.

I love my son. I love how he has grown and matured. I am excited now about what lies ahead for him instead of afraid to think ahead. His future is in front of him, just as much as any NT kid's is. So Happy Birthday Boo! Enjoy another year ahead!

Friday, February 15, 2013

Another man's Journey with Asperger's as an Adult

Journey with one man through his newfound discovery of his Aspergers diagnosis
I was reading some of the comments left on this blog, I decided to look at a blog of one of these commenters, and his blog posts reminded me of my struggles through life not kniwing that it was in fact my Aspergers behind the myriad problems I faced.

Read his story Asperger's / Year 56+: How it Started: and get another glimpse of an adult diagnosed with Aspergers.

Raise The Flag! Celebrate World Autism Awareness Day

Help raise awareness about autism and Aspergers and get your city to raise the flag!
Municipalities all across Ontario are being sent the World Autism Awareness Day flag to raise at noon on April 2nd, 2013. This event will hopefully help raise awareness of autism, and have people to take the time to learn what Autism Spectrum Disorders are all about.

Event Details:
When: April 2nd, 2013 @ Noon ET
Where: City or Town Hall in your municipality
Why: To raise awareness of Autism Spectrum Disorder (ASD)

Please encourage your local municipality to raise the flag! If you want more information then read the full press release here.

Thursday, February 14, 2013

The trials and tribulations of a spouse of an Aspie

said and done

To be honest, this post should be written by my wife, as she is the one that has to live with me, she is the one who has the special ministry of being partial to most of my meltdowns, quirks, inappropriate comments and behaviours, and all the other things that make an Aspie so easy to love.
She is the one who really brought it home to me the reality that I may have Aspergers. As much as it has helped her see that many of the things that I have done in the past were not known to me, or perhaps not totally my fault, it hasn't made it any easier to deal with me now. After all, I was an aspie before we figured it out, and I am still an aspie now.

We can hopefully better navigate our life together, and perhaps learn new ways to communicate and cope with each other, but we now know the road ahead is difficult, and it won't be much easier in the short term.

Fortunately we both have individual counsellors as well as a marriage counsellor that have been along with us through this new stage of realizing I am an aspie, and the stages of grief and acceptance that we both are experiencing.

What makes things more difficult for my wife, is that she has spent the last 5 years trying to nurse me along through very difficult illness and then the long term pains with fibromyalgia. I have not been at my best during this time, as my sensory issues went into overdrive, yet still she loved me, and liked me most (or some) of those days.

So last night while she was pondering again her lot in life :) , she emailed me a few links to articles on helping neuro-typical (NT) wives get support and understanding from among their peers.  She also gave me links to an article to aid therapists on how to support these women.

At first when I read them I felt depressed at how difficult I have been to deal with, and the emotional weight that she will have for the rest of our lives together. Then later it occurred to me that I should share these links and my thoughts both for therapy, as well as to let others know of some resources, and to tell these NT women - There is hope.

Here are the links.  I hope they help.  If you have any comments, please enter them below.  I enjoy getting feedback.

Frequently Asked Questions on Asperger Syndrome
Asperger & Marriage
Therapy Recommendations for Marriages Impacted by Asperger Syndrome

Monday, February 11, 2013

Ontario report on large study about youth and adults with AutismSpectrum Disorders is released

Some blurbs from the press release:

Today, the Research Report on Ontario's Youth and Adults with Autism Spectrum Disorders has been released.

The study profiles the needs of 480 youth and adults across Ontario. It identified that along with the core features of an Autism Spectrum Disorder, youth and adults also are faced with many other struggles related to health conditions, medication use, mental health problems, social isolation and other disabilities.

In addition, these youth, adults, and their families find a scarcity of services and supports that are knowledgeable about their needs. In the report, many adults and their families remarked their communities lacked ASD-specific expertise and capacity, especially when it comes to adults. Many reported unsatisfactory experiences with the new Developmental Services Ontario (DSO).

Other findings of the research include:
  • 75% of the adults 20 years and older had an annual income under $30,000 o The largest income source was the Ontario Disability Support Program for
    209 (58.2%) adults
  • Full-time employment was the primary income source for only 50 (13.9%),
    and part-time employment for 22 (6.1%) of the sample
  • Only 51.8% of the sample with “high-functioning autism” or Asperger
    Syndrome were diagnosed before 21 years of age
  • Over 60% of the youth and adults needed regular support accessing services o 31% of respondents felt they had an undiagnosed mental health disorder
  • 38.4% took part in only one social interaction or less a month
  • 73 people (15.2%) had no regular, structured activities outside of home

To read the Press Release and find out more, click here.

To download the full report click here.

Saturday, February 9, 2013

A good social skills game - Friendship Island

Our family used to be involved with Discovery Toys, and they always had really neat and unique games and toys. One game that they had that has been really helpful with my autistic son and aspie (Aspergers) daughter (and everyone else to be honest) is Friendship Island.

It's a game that helps kids sort through different social scenarios and come up with ways to appropriately handle situations that come up in every kids' life.

This review of Friendship Island goes into greater detail than I could, and has a really funny link to an episode of The Big Bang Theory...

This game is available through amazon and other retailers now, and there are links to that in the review.

Try it, it's a great family game!

The world missed me too when I was a kid

I just finished reading an article on a blog about someone who looks back at childhood and years growing up in a time when there was no such thing as Aspergers.

Now as an adult only now learning that I have AS and am an aspie, can I go back through the memories of my past and look at things through an aspie lens.

I am not many of the names people associated with me. I am not to blame for the way I thought, or did things, or felt. I was being me. I was far more free to be me as a young kid, but as I got older it got harder and harder to be me, as I had to struggle to conform more to be "normal"

I wish I could redo things sometimes, and know that I had AS and learned how I could be me more as I grew up...

Well, I have my aspie daughter to mentor and guide through life. It is so hard to keep myself from trying to get her to conform. It is only as I have been so stressed with trying to deal with her and understand her have I realized how much she is like me.

More thinking and reflecting and pondering my aspie life soon to come.