Storms & A Final Assessment


We had a lot of storms here last night. I've lived through these my whole life, so they don't get me too upset. I know it should. But the idea of going to a shelter where there are other people scares me far more than the storm!

I know it was much worse in other areas of Oklahoma. Kay said she lost her electricity. I didn't have anything happen. Once or twice the lights flickered and that was it. 


We just stayed right here and I finished my John Grisham novel. Of course there was nothing on TV but weather, which is customary. 

In other news...I have had many emails from those of you who were interested in the autism diagnosis as it affects either yourself, someone in your family, or a friend. You have asked that I continue to take you along this newly discovered journey.

So in the vein of transparency, I will give you the diagnosis I received in the final report in the mail yesterday.

Diagnostic Impression:

299.00  Autism Spectrum Disorder

296.33  Major Depressive Disorder
300.29  Social Phobia, Generalized (Secondary to Autistic overstimulation)
300.15  Dissociative Disorder, NOS (by history)

The doctor wants me to remain on the same medications I've been taking. So I suppose these other diagnoses brought about that decision. 

I can't seem to find a lot of information online about adults with autism. I can put adults with autism in the search engines, but almost every time it comes up with data on children. 

So for those of you who have children with autism, which of course has a very wide range of symptoms and quality of life, I guess you can look at me at age 58 and your child with similar symptoms and know what they're looking at. 

I know I live in my own little world, but it has worked for me. So if they can find a place in life where they feel safe and less anxious and over-stimulated, then that's quality of life for them. 

On that note, some of you expressed that I don't get out enough. And I fully understand how you would look at this, based on your own view of life, and come to that conclusion. 

However, having said that, the report said: "Her social deficits and anxiety problems have made it impossible for her to work in traditional venues. 

"Brenda has a history of dissociative episodes that began at age 12. Some type of sensory stimuli triggered each dissociative experience she has had. However, since she has not been able to identify a pattern in how this occurs, Brenda simply limits her time away from her apartment. Brenda is very sensitive to external stimuli and is easily overwhelmed by noise and crowds. She also has a pronounced and exaggerated startle response. 

Results of Psychological Testing: 

GARS-3

Autism is a sensory processing disorder. In other words, people who have Autism simply do not process stimuli in the same way everyone else does. The GARS-3 is an objective assessment tool specifically designed to assess for the symptoms of Autism Spectrum Disorder. It is comprised of six subscales:

Restrictive/Repetitive Behaviors
Social Interaction
Social Communication
Emotional Responses
Cognitive Style
Maladaptive Speech

These subscales cover the gambit of the common symptoms and experiences of people who have Autism. Brenda's lowest score was in the area of maladaptive speech, but even on this scale she scored at the 50th percentile. Brenda's highest score was in the area of Cognitive Style, scoring at the 91st percentile. This indicates that Brenda has significant difficulties with the cognitive processing of information she receives from the environment. 

Brenda achieved an Autism index of 115 indicating she is very likely to have Autism Spectrum Disorder. In fact, the GARS-3 has two levels of "Very Likely" to have this disorder and Brenda scored in the higher, more extreme level. Her high score on this instrument indicates that she likely requires substantial support and accommodations to function effectively."

It goes on to report low self-esteem and long-standing beliefs about my feelings of inadequacy. And my history, which is not pertinent here.

"She has difficulty managing routine affairs, and the items she endorsed suggest a poor memory, concentration problems and an inability to make decisions."

I won't go into the feelings in his descriptions of how I feel, because it is long and drawn out. Plus, I think these feelings of inadequacy I've felt all my life are based on the fact that I could not be like other people, and my subsequent frustrations because I could not achieve "their level of perceived normalcy."

This assessment was based on:

Minnesota Multiphasic Personality Inventory, Second Edition (MMPI-2)

Gilliam Autism Rating Scale, Third Edition GARS-3 
Clinical Interviews

I don't know exactly what all of this means. But if you are reading this, and as a professional, know some of the criteria explained here, I would appreciate your helping me sort through it.

I hope this helps someone who is either dealing with this, or wondering if they should have the testing done for themselves or someone in their family.

I have disclosed much of this report in the hopes that it will help someone dealing with this complex disorder.

If you have questions, leave them in the comments and I will try my best to answer them.

41 comments

  1. I like how you are sharing this information - it is very informative and the more I read it I am beginning to wonder if one of my son in laws has a form of autism - I am going to gently pass some of this information on to my daughter and see what she says. you have formed a life for yourself that seems to work for you - you are very talented in the arts I believe and although you spend a lot of time by yourself others do that too - I have little need for getting out and doing things and my husband and myself kind of stick to ourselves through choice - we just do not like crowds and are happy. I think you are doing a good service sharing this info - you can never tell - even if it helps only one or two - it might be good therapy for you in sharing

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    1. I was a bit hesitant about this disclosure. But you all know much of what has gone on, so why not continue? And, as you mention, my thought is that it will bring conversation to the table of other families who think maybe and what if...but don't know. I feel strongly that knowledge is power. So I would rather know.

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  2. Glad that you didn't have any trouble with the storms last night.
    Thank you for sharing your diagnosis with us. I don't understand what all of it means, but if you can find a safe and happy place at home with your pups, then I think that you are doing well. Keep doing what makes you happy and try not to stress on the things that you can't do. All of us have our burdens; we just have to find what works for us, and I think that you have found some peace.

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    1. You are right, we all have our burdens. They are just different. I share in the hope that it will get others to be tested so they can stop berating themselves for the things they are incapable of doing. I did that for 58 years. My hope is that they find out much, much sooner. And come to accept themselves. We all also have strengths, and I think I have found mine in creativity. Which gives me a measure of accomplishment.

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  4. I continue to watch in awe your road of discovery of autism at such a late stage. We continue to watch and see where the journey will take our son.

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    1. I wish him well, your son. And that he has wonderful and concerned parents will go a long way.

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  5. While I was getting ready for work this morning, the news of Oklahoma storms caught my ear right away because of you. Glad everything is alright. The news always makes it sound like the entire state has fallen off the face of the earth. Thank you for sharing your report. You sure have guts. I am not sure I could do it. But if it helps just one person, then it is so well worth it. Hugs.

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    1. They always do that. It is "weather drama" around here. If there are no murders to report, then they focus on weather.

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  6. I want to comment on the fact that you said some people have told you need to get out more. I really don't understand why anyone - especially someone who doesn't know a person really well - would say this to anyone.
    I have my own issues having lived through severe trauma in my life for over ten years that drastically changed my life and affected my health. I've even been told that it's believed I have PTSD. So I completely understand your desire to NOT go out more and to remain at home. I feel the same way and just don't find it worth the effort to go out much especially alone, without my husband.
    I don't have hardly any friends where we live and honestly it's because of the way they react to the way that I have to deal with my life. I have anxiety as well and have panic attacks. When I go out people are rude, loud, obnoxious, inconsiderate and they almost always send me over the edge. Add into that the traffic that I must deal with in my rather large city and it's just a nightmare.
    I do manage to get out to the grocery store, to the salon and to the doctors appointments that I have most of the time without my husband. But there are days that if my husband cannot take me then it must wait and that even means rescheduling doctor appointments. I cannot even drive my dog to the vet alone because it is clear across town and it usually causes too much anxiety. AND YES I am in treatment for this.
    Add to all of this my depression diagnosis from the constant chronic pain that i must deal with and the many other symptoms my body faces each day. People can be so insensitive to all of this. My life has to be a routine. I must stick to the way things work for me every single day. Most do not understand and frankly those I've experienced don't want to understand. They only want to give their opinions of what they believe I should be doing for my life. I've just tired of all the opinions and the uncaring attitudes that I get from people and it's just better for me to not have them in my life.
    I understand completely why you do things the way that you do Brenda. I commend you for all you've faced and yet still managed to find a way to make life work for you. Good for you! and keep it up!

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    1. Well, I know they were well-meaning, but just cannot fathom exactly what that means for me. I might be the same way if I was on the other side of the window looking in, so I don't fault them that. They are looking at things through their own life experiences. I'm sorry for all that you've suffered. For people like you, that is why I write this blog and tell about my journey. You and I would be better off living in small towns, and it may come to that if I can afford it. Much of my anxiety comes from worrying about money, as I'm sure it is with most people in this day and age. And I well know that pain does not help, but hinder matters. Stay strong, as strong as is comfortable for you. And enjoy life on your own terms.

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  7. Been checking in due to the tornadoes so I am glad that you are ok, safe and sound ! :)

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  8. I am so glad you are safe from the storms, Brenda. It was interesting to read the information about your condition, and I am glad that you are learning so much more. As you say, what is right and comfortable for you may be hard for others to understand, but you must do what works and makes you feel peaceful and calm. We are all different, after all, and each person has their own way of being. Wishing you well on this new journey of discovery, and sending love.
    Helen xox

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    1. Oh Helen, just clicking on your blog brings me color love!

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  9. We have a 10 year old grandson diagnosed with autism & asbergers. I don't know much about it all at this point but he's a smart little boy so hopefully he will function well in life. I did find a small blurb in Country Woman magazine recently about Temple Grandin, an adult, with autism. I haven't had time to explore her website yet but here it is - http://www.templegrandin.com/

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    1. I got one of her books online from B&N, at the behest of a reader. She is quite accomplished, despite her deficits. There appear to be many with autism that are very talented in other areas: the arts, math, creativity, writing. Makes me wonder what kind of brain wiring causes that.

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  11. I thought about you after hearing all of the weather news from your state. I am glad that you and your pups are safe and sound. That is the cutest picture of your pupster on the bed. It looks like he is pondering something, or was that just his "pensive" pupster pose?

    I don't know why people would judge that you need to get out more. It seems to me that you accomplish a lot at home and you enjoy what you do, and you are comfortable in your home. So I don't understand why you should get out more if that does not bring joy into your life (especially now while you are dealing with your ankle pain). Getting out just to be getting out isn't everyone's idea of what is enjoyable.

    I am relieved that you are safe despite the storms. When the weather starts going overboard on all of the tornado alerts, volum and marginal risks start being spun into major frenzies, and they seem to start doing cheerleading for severe weather, I turn the volume down and just keep an eye on the screen. They really start to get on my nerves with all of it after a while, but for safety sake , here in the Midwest, we still need to be aware of what is going on.

    It is good to know that you are safe..

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    1. I guess having been exposed to this "drama" of the weather has inoculated me against being very afraid. And I know that can be dangerous. Lots of people were affected and some lost their lives, so of course they should show due diligence. The sirens went on for hours and hours, which drove the dogs crazy.

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  12. I am glad that you are safe. I am terrified of thunderstorms after living in a house that was struck by lightning. Wish I could be as calm as you are. Regarding your diagnosis, I would say that now you know what you have been dealing with for many years and where you are headed. It gives you a way to control what you can to make your life happier. That being said, I will also tell you that I believe in mind over matter. Thirty years ago I was diagnosed by two separate doctors in two different countries as having an autoimmune disease that was life threatening and neither expected me to live much longer. I was not ready to give up and I set my mind on being well. I am still here and expect to be for many years to come. Don't underestimate the power of the mind and the will to thrive. It can change body and mind chemistry.

    Big Texas Hugs,
    Susan and Bentley

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    1. I agree with you on power of the mind and the will to thrive. But you can't change brain chemistry and genes, unfortunately.

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  13. So glad you are safe from the storm! That's wonderful of you to share something so personal to help others! As an educator I have had lots of experience helping others with autism. But it doesn't define you... remember that above all else. Live your life for what works for you and remember no diagnosis is set in stone and medical opinions vary. Too often people let others dictate what they should or shouldn't do or be in life... but it's too short to not live fully and make yourself happy and content. Wishing you all the very best! :-) Blessings,
    Jill

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    1. In as much as I view it, I feel that I am living a peaceful and happy life. It means doing things differently from some, but you have to do what works for you. And I have learned to adapt.

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  14. I am relieved that you are unaffected by the storms. I hold my breath every year about this time hoping that we don't get blown to Kingdom Come. The more you write about your diagnosis, the more convinced I am that this is what explains the behavior of my mother-in-law. Like you, she has seen many docs and therapists over the years, and is on quite a cocktail of meds. The things you have talked about describe her to a T. It also helps the ones who love her to understand her better, and maybe modify the way they interact with her. If you want to keep writing about it, I will certainly keep reading it. Back when I was taking all those psychology courses, not much was known, so this is very interesting.

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    1. A shame that a person has to find this out at age 58, but I guess that's better than 68.

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  15. Brenda, I share so many of the same personality traits with you. I am a total introvert that always prefers to stay home and avoid any and all social situations. I live in a very small world of my own making that I am happy and comfortable in. My little house, my three dogs, and my garden/ backyard are all I need to be happy. And I do enjoy spending time with my immediate family as they totally "get" me and don't try to change me... My husband and my two adult daughters are my best friends, and I have no need or want to socialize with others who tell me I need to get out more. I've had many major surgeries over the years due to a chronic disease that causes me much pain to this day, and I found out early on that my so called friends could'nt deal with the limitations my disease caused. I've always had social anxiety and cannot stand to be in groups of people anywhere, from a party to a crowded restaurant or store will cause me a panic attack. I've learned to do almost all of my shopping online, and have found that I can even shop online at my local grocery store and they will deliver it to my door. My husband drives me to all of my doctor appointments and picks up my prescriptions for me. He is a wonderful dear man, that I love and appreciate so much. He understands me and never tries to push me into any social situations, even large family gatherings at Christmas. I try to attend, but sometimes I just can't do it... I remember my Mother constantly urging me to go outside and play with the neighborhood kids when I was a little girl. I remember being crippled with anxiety on a daily basis all through my school years. I coped as best as I could, but I was always seen as different and I never fit in anywhere. Nowadays, I totally accept who I am and don't practice self hate anymore. It is so interesting to me to read of your diagnosis, Brenda, and wonder if some of it might apply to me as well. I have loved reading your blog for many months now and I have always felt that we are kindred spirits

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    1. You are lucky to have such a wonderful and understanding family. That's where much of my depression comes in, my lack of a relationship with my older daughter and not seeing her children. I didn't want to go outside either. I'd rather read the dictionary! Not most children's cup of tea!

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  16. Brenda, I just started following your blog about a week ago. Don't ask me how I stumbled upon it because I surely cannot remember exactly. I think perhsps you commented on another blog and I saw your 'name' of Cozy Little House. I live in a cozy little house do I think that is why I clicked on the link.

    It took me to your posting on your first kitchen reno/decor which was what I was interested in since I seriously need to do something here. I read through the post and then one or two more and thought to myself, "hmm, could she be on the ASD spectrum? " As far as I'm concerned, there's nothing wrong with you. I'm a teacher in a special education class and have 2 wonderful children in the class who I firmly believe are also on the spectrum. I was so happy this Monday because one of two had been absent for the past 2 months because his family took him to visit family in India and he finally returned. I love him to pieces!!

    My class is supposed to be for another type of special education designation so I know both of them would be served better in another placement. But politics and $$$$ come to play in these matters. Both children do not speak English as a first language and we're tested/assessed when only 5 years old. They had only entered school and just began to learn English. The psychologist for our school refuses to retest because he "already gets extra support in the class he is in now". I'm only a teacher and have had my hands slapped do many times over this issue already. Both fathers are very against any special designation because of 'stigma' issues. Neither of the mothers speak English and in their cultures, women have no say anyway.

    I read through your snippets of reports and they are much like the ones attached to my students. I just love my little ASD guy. Any of the other teaching professionals who have met him all agree that his ASD is indeed there and I'm not imagining it. He would receive more support than he gets in my class if I could get testing done (without being fired). *sigh* We humans are not good to each other, are we? It all boils down to the testing costs money, and if ASD was diagnosed, an educational teaching assistant would be assigned to them to hrlp them better access learning at school.

    You've created s beautiful home for yourself. I could see myself enjoying a cup of coffee on your patio. I'm not a loud person. In fact, I'm probably quite quirky and my own struggles with ADHD have made me astutely aware that we are all different in some way. As far as I'm concerned, that's a good thing. We are the salt of the Earth. We are the one who provide the flavour (oops, another Canadian spelling) to life. You're perfect in my eyes! Thank you for sharing your perfect home and garden with us. I actually think that you've got a whole lot of friends in this world.

    I've figured out you're living in Oklahoma. My dear hubby who I earlier identified as being from AZ also lived in CA and TX. When we have driven to AZ to visit his family, we've passed through Oklahoma. All I was able to think about was tornadoes. I have nightmares about them (started after watching The Wizard of Oz when I was a kid and I'll be 59 this year.) I could NOT live there!! And yes, your storms made the news up here in Canada. Stay safe.

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    1. That is just shameful that those children are being what I consider short-changed by the school system. My testing was $750, and I hope the insurance picks up most of it. Those poor children, not knowing why they're different, and as a consequence, suffering. Because other children can pick them out very quickly. I was in a small rural school, but still, it seemed loud. Other children don't understand "loud." I was tortured by firework noise when the 4th of July came around. I would rather have hidden under the bed with the dogs! People just do not understand how profoundly it affects you if sound is the issue. It is a deal-breaker on going out and being social. The final straw for me is the cell phone conversations going on all at once everywhere I go! It is so confusing I just head for home.

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  17. I have a handicapped daughter so I can understand some of the autism diagnosis. But as far as your statement about being different because you don't want to socialize all the time, I don't think you are 'abnormal' in that. I don't think I have autism but since I was a little girl, I have wanted a little, one-person house in the woods all to myself. When things get tough in my life, I dream about a small house all to myself alone. I don't think I am autistic or different.

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    1. I only like to socialize with one person, just not often.

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  18. Really proud of you for sharing all this Brenda. I know it will help many others. I'm in the process of learning about Autism since my great nephew has been diagnosed. Glad the storms weren't that bad. We have them here also and I just hunker down.

    Linda

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    1. There's a plethora of info on children, just not on adults, from what I've found.

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  19. Hi Brenda, I think you handle your life extremely well - and you should be proud that you know what works for you :) If you have diabetes, you would watch sugars...........SO, if crowds overwhelm you - it seems very responsible to manage your time and outings carefully. Take care of yourself and your pups ox

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    1. I thank you for your comment and support!

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  20. You are very intelligent and creative - despite the other problems. I am thinking that perhaps you would now qualify for social security disability payments, and you have the paperwork to back it up. This may be something you would wish to pursue with a lawyer. They usually do not charge you but take a percentage of any settlement you would get. This could help you financially.

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  21. Hi again! Brenda, you might want to check out seventhvoice.wordpress.com - I think you will find it uplifting and inspiring. I thought the article - "I looked at the world for 50 years and the world looked back" written by a women in her 50's recently diagnosed with autism - Aspergers, was particularly good.

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  22. Hi, Evidently my first comment didn't go through - I just said this really hits home - my grown niece (she is 36) has Aspergers - a form of autism. She is a wonderful person, so kind, so smart (she has a master's degree), but she struggles socially and has some other issues. Bottom line - you are content in your cozy little house with your precious little dogs - this works for you and there is absolutely nothing 'wrong'. But, it will help you to learn more about autism - Aspergers - there is so much information on the internet. Thank you for having the courage to write about his - I admire your honesty.

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  23. Sometimes when I read your blog, tears well-up in my eyes and I say, "Yes. Yes. Yes." Today, that happened when I read, '..pronounced exaggerated startle response". Oh, my goodness. I didn't even know there was such a thing. When my family drops anything, they immediately say, "I'm sorry!", because they know it terrifies me. I've never known why and it progress in this order: shock or extreme startle, adrenalin rush which causes me to be angry, and then tears. No matter how I try, I cannot control this sequence. I have learned not to lash out, even though that is what I want to do instinctually. I'm very easily overstimulated as well. We were in Aldi (a small grocery store) the other day, approaching the check-out line. The people, shopping baskets, conveyer belt moving groceries, cashier punching buttons on the cash register, people rustling grocery bags, automatic doors opening and closing, became more than I could bear. I was on extreme overload. I asked my husband for the car keys and excused myself. Ironically, if I don't have to participate I can do better. If I can just watch, like sitting way out of the way at an airport just watching people, I'm alright. But if I have to stand-up and walk around and risk being bumped or touched by a stranger...not so good. I've always just thought I was nuts.

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  24. I read this on someone else's blog today and thought of you. No attribution was given. 'And if I could tell you one thing it would be: You are never as broken as you think you are. Sure, you have a couple of scars, and a couple of bad memories, but then again all great heroes do.' I hope you have a good day...a really good day.

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I always enjoy reading your comments and having you join the conversation here at Cozy Little House. It is like having a gathering of friends sitting in my cozy apartment. Enjoying coffee and dessert, chatting and having a good time. I appreciate each and every one of you! However, if you are a no-reply commenter, I cannot reply via email to your questions or comments.

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