Hello again!

Hey everyone! I haven't blogged for quite awhile now. About 8 months to be exact. I have been very sick and am actually still dealing with some chronic health issues. I want to apologize if this post is not written well, and/or hard to follow. My "brain fog" is extra foggy today. ;)
 Well, my health has been rapidly deteriorating for awhile now, but especially in the last year or so it had gotten terrible. I found out 7 months ago that I have Late Stage Chronic Lyme Disease. The tests showed both long-term infection, and recent infection. I have I had it for 20+ years, but I have also got bit by infected ticks (who carry the Borrelia Burgdorferi bacteria and other terrible co-infections) a few times throughout my life. I also have Bartonella, and Babesia, which is comparable and similar to Malaria. I know that in one of my earlier blogs months ago, I talked about my Health issues and how I have several.  I have been misdiagnosed with MS (in late 2012), Fibromyagia (in 2009), Chronic Fatigue Syndome..etc. I haven't felt "well" or not in some amount of pain since I can remember. My mom took me to many doctors when I kept complaining of fatigue, weakness, pain, among other thing, but they led her to believe I was "crazy" and even "attention seeking". No one even really knew Lyme existed back then, and if they did they had no idea what it was. So there was no chance of them testing for it, seeing as all of my symptoms fit. Another issue with this disease is that all routine lab work will come back completely normal for he most part, which mine did. So afte years of going from doctor to doctor and them all telling my mom I was "perfectly healthy" besides my learning disabilities and things of that nature (I didn't get diagosed with Aspergers either until age 16), she believed the doctors, and I don't blame her..what else could she do? In society, we are taught to fully TRUST our medical professionals. That's when my Mom and I's relationship started getting really rocky, is when I continued complaining of symptoms that according to doctors, just "weren't there".
Even 2 years ago, I was told that a lot of my symptoms were "all in my head that I was a "Hypochondriac", or it was "JUST Fibromyalgia". The reason I never gave up, and kept fighting to figure out what the actual cause of my ailing health was, was after my M.S. (mis)diagnosis, I came across a photo of a "Bulls-eye rash", and I clicked on it because I had that EXACT rash 4 years previous. The caption read "EM rash indicative of Lyme Disease. If u get this rash, seek help immediately." Four years before that we had a campfire in our backyard, and when we got inside, I told my husband, "come look at this weird red circle mark on my arm, what is this like ring worm or something? (lol)" He had no idea, and our yard was in the woods, full of bugs, so we put some Caladryl on it, and since it didn't itch or bother me, we never thought twice about it(this is why awareness is sooo important).
I looked up Lyme Disease. I read it was "the great imitator" because it had the same symptoms as over 50 diseases/conditions out there. I had ALL of the symptoms. Now I needed a diagnosis to prove that I wasn't "crazy". It wasn't easy, that's for sure. I literally had to BEG doctors to even TEST me for Lyme (the reason WHY I will explain further into this post). Once I finally talked my Rheumatologist into testing me for Lyme, he said "ok fine but it will come back negative, Lyme is EXREMELY rare and you don't have it. You have R.A." (Sidenote: R.A. is a SYMPTOM of Lyme bc it is CAUSED by Lyme itself). So he sent me for an ELISA test. The problem with Lyme tests, are there aren't any accurate ones. 50% of those with Lyme will test negative on both the ELISA and Western Blot. Another problem, is that there are over 100 strains of Lyme, and standard labs only test for 4 or 5 at most. There are no false Positives. So if you're positive you're positive. Now in my case, after my ELISA came back Negative, and I cried for hours(its hard not knowing what's really wrong with you, or when you do know, but no one will believe you). Well I never gave up and kept fighting to figure out what the actual cause of my ailing health was..but I did. It wasn't easy, that's for sure.
 I paid $270 to have my "Western Blot" test sent off to the top lab in the country (Igenix Labs) the most accurate and skilled in testing for Lyme Disease. About 16 days later my Doctor's office called me and said, "your test came back POSITIVE for Lyme Disease". I thought, "FINALLY now I can receive the RIGHT treatment and get better!" Well, here I am 7 months later, and I am absolutely miserable because I haven't been able to afford the PROPER treatment which is IV antibiotics that the insurance refuses to pay for. The insurance and IDSA guidelines say "28 days of oral antibiotics should be sufficient". Whats a joke. IV antibiotics are the only way to treat a case like mine, where it's late stage, and chronic due to going undiagnosed for so many years. The little bacterial spirochetes are shaped like a cork screw. After years, or in some cases even months, they burrow into, and hide in your joints, brain, heart, organs and that's another reason it's often hard to detect in someone who has been infected as long as I have. Because your body stops producing the antibodies in the blood after awhile. They can also morph from spirochetal form to cyst form, and even surround themselves with a biofilm which is a protective outer shell, that nothing, even antibiotics, can penetrate. (By the way, I may not be explaining this well right now, but doing the best I can because I want everyone to be informed.)
I have become increasingly disabled, and symptomatic over the last 4yrs especially. It's wreaked havoc on my body in so many ways. Its's so complex. I have thyroid issues, arthritis, neurological probems, neurological issues, muscle weakness, dizziness, trouble walking to another room in the house some days, pain in joints, and musculoskeletal pain..etc. the list goes on. Add Asperger's (or ASD, as I've been told, is more PC these days) to that list, and let me tell you, it is so hard dealing with day to day life. I probably would have given up by now if it weren't for my 6 yr old daughter. She needs her mom to be healthy, and I refuse to be a "sick mom" for the rest of her life!
Research has found that Autism and Lyme are very closely linked. One scientific study showed 8 out 10 people on the Autistic Spectrum also tested positive for Lyme Disease. Lyme Disease is truly an EPIDEMIC in the US, but due to greedy people with "special interest" in the disease, I doubt you will be made aware of this debilitating disease through any media outlet, or even through your doctor. Again, that's why spreading awareness is so important.  A few of my doctors have told me I have "Lyme-induced Autism" which just means they believe it was/is the "cause" of my AS. Does it mean it will "go away"? Well I'm not so sure. But I have heard/read stories where kids who had ASD were "cured"..one of them, right here in my county by my LLMD (stands for Lyme Literate Medical Doctor). He began speaking, when he would not speak before, among other improvements. The LLMD's are the only ones that will actually TREAT the Lyme and break the outdated IDSA guidelines that say Lyme is "Rare", "hard to get", and "easy to cure". All of which are FALSE. I have been doing Antibiotic Therapy, which is the main treatment for Lyme Disease. Unfortunately, it causes a "herxheimer" reaction, whch means the antibiotics make you very ill due to the bacteria "die-off", and the body not being able to detoxify as fast as it needs to, so temporarily it become toxic and makes you feel extremely ill. But u have to get worse before you get better..so they say.
 I started getting better 3wks into the antibiotic therapy..I was able to climb stairs again without my legs feeling like jello, sweating, heart pounding, and being out of breath. I was able to do physical things I have been unable to do for years! That lasted about 3 months. 3 amazing months. Then we ran out of money to continue the treatment I needed, and still need. We are having financial issues now because most of my medical costs have to be paid out of pocket. Just was finally able to get a laptop again, the one I am typing on now. It was a gift. Anyway, it's sad the medical community is hiding this Epidemic of Lyme Disease from the general public. They try to keep it out of the media for several reasons. Insurance companies have actually paid off the IDSA and CDC, since antibiotic therapy is so expensive, and there are soo many people out there who are getting misdiagnosed(like I was with MS) and/or don't even know WHY they are sick, when in reality, it's most likely Lyme Disease. So if they actually were made aware, not only would the insurance companies have to shell out ALOT of money for antibiotic therapy, but BIG PHARMA doesn't want people knowing the root cause of pretty much every disease out there with an "unknown cause" because then those people would be interested in treating the ROOT cause with antibiotics rather than continuing to mask their conditions with things like Lyrica, Cymbalta, anti-depressants..etc. And they would lose a lot of money.
It's all one big mess, as am I..lol. I will continue posting the research and links between Autism and Lyme Disease.

Lacey G.

Who am I? Really, Who the hell am I?

So it's been a couple weeks now since I have been formally diagnosed with AS, and found the answer I had been searching all my life for, which is "why am I so different". And I am now becoming increasingly frustrated. I'm frustrated because when I found out, initially I had thought that it might make figuring who I was, who I am, a whole lot easier. Well sadly, that is not the case. I am actually more confused than ever.

I went to my therapist yesterday afternoon, and she told me that it's completely normal to be feeling this way after discovering I have Aspergers. Especially after all these years of being unaware I had it, and having to figure out how to navigate through life on my own, while feeling like I didn't belong, and not understanding why. I don't even feel like I belong in my own family. I never fit in, and they always joked, and made fun of me. It was hurtful, and caused me to have very low self-esteem. I would try so hard to be the person that they wanted me to be, but no matter how hard I tried, they still never took me seriously, or accepted me. I didn't really understand the concept of "unconditional love" until I met my Husband.

I believe my Dad has Asperger's himself, and I am positive this is the parent I inherited AS from, but he will never know, because if I brought it up to him, it would not go over well. He hates "diagnosis" of any kind. I have made an attempt once before and will never make that mistake again. And although "knowing" would help most people, I don't believe it would help my Dad because number one, he wouldn't accept it, believe it, or care quite frankly. And number two, he doesn't like anything that involves talking about feelings or admitting that he might be flawed in any way. Growing up with a Father like mine was a challenge. He's very irritable, sensitive to little noises(typical AS), has all of the sensory issues, which I can understand and relate to. But when him and my mom had kids(my brother and I), my Dad wasn't very happy about it. I have been told on more than one occasion that I was an "accident"(I was their first born). My dad could not handle what comes along with having kids(noisy at times, messy, interfered with his daily routine, costed money..etc). "Kids will be kids" was just not a concept he ever understood or accepted. I got yelled at ALOT for things most parents would be understanding about. I remember once, when I was going through my obsession with yo-yo's, I was "making it sleep" so it was spinning which makes a very faint noise, but he grabbed my yoyo, threw it, and yelled at me for playing with my yoyo. I got in trouble even though I didn't realize I was doing anything wrong. And with me having AS, I was alot more sensitive than the Neurotypical child, and that also caused problems because then I would get screamed at for crying, which everyone knows, yelling at a kid to stop crying is not gonna make that kid stop crying. And that is just one example of something minor. I could give lots of examples but we would literally be here all day. My feelings were never something he cared about, and my opinions didn't matter. But since I have AS, I understand that it's not his fault he's this way, and I do not hold it against him.

When my dad is talking to other people, he always brings the subject back to his current obsession which is usually something with a motor(like Jet Ski, motorcycle, boat..etc). Someone will be talking about their grandmother dying of cancer, and my dad will say "yeah so doesn't my bike look great, I just waxed it". I don't think he means to be that way, but he comes off as narcissistic, and cold. Which is why I really wish he would go see someone about ASD but he never will, so it's not like people can understand that he has a problem, and why he is like this.

I think as a girl, I have learned to observe human behavior, and choose what works best in certain situations. For instance, I have seen how people react to my dad always switching the subject back to his interests, and that has taught me to try and listen to what the other person is saying and at least act like I care, no matter how much I really don't. I am not referring to someone talking about their dying grandmother, I mean something like someone talking about their new job, or something like that.

My mom has Borderline Personality Disorder(although she has never been formally diagnosed by a therapist, because my parents don't "believe" in Therapy, because they say it's all just a "scam" for money). Anyway, I got very into Psychology in my teenage years, and since then have tried to learn pretty much everything there is to know about it. It is one of my obsessions. There are 4 different types of BPD and my mom would be considered the "Queen" type Borderline. She had a rough childhood. Her mom died of Breast Cancer when she was 7yrs old, and her father was an alcoholic. Her godmother(a very sweet, loving woman) helped raise her too, but she lived with her father the majority of her life.

Dr. Lawson writes:
"The darkness within the borderline Queen is emptiness. Emptiness and loneliness are distinctly different emotional experiences. Whereas loneliness results from loss and evokes sadness, emptiness results from deprivation an triggers anger. However, not all Queens experienced loss in early childhood. The common denominator among borderline Queens is emotional deprivation. As children they felt robbed; consequently, they feel entitled to take what they need."
          "The Queen relates to others with superficiality and an air of detachment. She may perceive others, including her children, as a threat to her own survival unless they relinquish their needs for hers. Queen mothers compete with their children for time, attention, love, and money. Superficial interest and a lack of attunement to the child's emotional needs are typical of Queen mothers."

The above explains my mother perfectly, unfortunately. Growing up with Asperger's(not knowing I had it, just thinking that I "sucked", as my mom would say) and having a mother who just didn't seem to care about me, and instead of helping me with my insecurities, she just helped make them worse, criticized, and made fun of me. I am always being told I am an adult now, and that I need to "just get over it"(the issues with my mom) but it seems impossible.

On top of the challenges I've always had in life because of AS, I now have a bunch of health problems on top of it. My doctor diagnosed me with Fibromyalgia 5 years ago, and before this year, all my test results were coming back "normal" for the most part, but I kept pushing for more tests to be ran, because I could just not accept that how badly I was feeling and all of my symptoms were due to the Fibromyalgia(and there is no test to "officially" diagnose Fibro, it's usually just the label they give you after they have ruled most other things out), and although Fibro is a very real thing, alot of doctors don't take the diagnosis seriously for some reason and just let you suffer, saying there's really "nothing you can do". Well I just refuse to accept that. So I went to a Rheumatologist, and he ran some tests for Autoimmune diseases. My ANA(anti-nuclear antibodies), came back Positive, which indicates autoimmune disease of some kind. So now at my next appointment I find out which autoimmune disease it is that I have(hopefully not lupus, although the doctor suspects it), and hopefully whatever it is, there is some kind of treatment for it, so that I don't have to go on living like this. I am only 26 years old, yet I feel as if I am 90. I can't even make it up one flight of stairs without my legs feeling like jello, getting overheated, and being so out of breath you would think I just ran 10 miles. I know how badly stress can affect our bodies in a physical way, and I can't help but think that all those stressful years of trying to fit in, make my parents happy, saying all the wrong things, being laughed at, talked about, losing friends, relationships, not understanding why, being so unhappy with myself and keeping it all inside, could just be catching up with me, and possibly be the cause of my current state. They say dis-ease, causes disease, and I'm really starting to understand what that means now. My parents have never been "supportive" and one of their favorite things to tell me is "just suck it up and deal with it, you just have to". And what they don't understand is that I beat myself up everyday for the fact that I can't just "suck it up" or "push through it" like they think I should be able to. And knowing that I'm being talked about or judged by them for it, just kills me. My husband works out of town during the week, so I have recently started having to stay with my parents during the week so my mom can help me out with my daughter on my really "bad days" where I am unable to even take care of myself. It kills me having to ask my mom for help. Now, I am not unappreciative, or ungrateful for her help, but she doesn't do it without complaining the entire time and making me feel bad. She knows stress makes me feel a million times worse, she knows that I have AS, but she doesn't let that stop her from calling me names or saying things to make me feel bad about myself. When the therapist told her that I have Asperger's, she read up the info he gave her, and she was like "wow, I can't believe you weren't diagnosed sooner, it all makes so much sense." But she hasn't really tried to TRULY understand it, and still says negative things about me that make me feel worse about myself than I already do. It's almost like she just wants to be able to continue to criticize me for "the way I am" like she always has, and now knowing that 98% of the traits she has always disliked and crticized me for having are actually AS traits, makes her mad or something. I need support right now more than ever. And yesterday on the ride home from my psychologist I told her how I am struggling to figure out "who I really am" after all these years of "faking it" and being someone I think they want me to be, and trying to make them happy, and after years of doing that, it's like I don't know how to be myself. And to that my mom said "well just keep doing that then, just keep faking it". Of course, anything that will make it easier on her. Just a few minutes ago I went to grab a kleenex at the same time as her and she got frustrated, and I'm like "wait, you really think I was trying to do that on purpose just to make you mad?" and she's like "yeah probably", and so I got upset because that is just absurd that she would really think I would do that. And then very meanly, she said, "geez you just can't handle ANY type of criticism can you, it's like I'm always having to watch what I say because you take everything so seriously" And then I felt my eyes well up, and just walked to my room, shut the door, and bawled my eyes out. And the thing is, I know for a fact she read the info my therapist gave her, and in it, it explained how people with AS don't take well to criticism(and I never have, my entire life, she know's that about me), so why is she now criticizing me more than ever, and knocking me for not being able to handle it, or "taking everything so seriously"? Does she really just not care? She also said "why should I have to tip toe around everybody? Why am I always the one that has to change my behavior in order to make everyone else's life better?" I didn't ask her to change, all I asked(and my therapist asked) was that she try to be more understanding. Guess that's just not gonna happen.
 I have been having a really rough week because of that very reason. If my daughter had AS(she doesn't), or some kind of disorder that I'm not familiar with, and was having a rough time, I would be nothing but supportive and there for her! I would be reading up on it like crazy, and trying to learn about it so I can better understand her. Not my mom though. She says it's because now I'm an adult, so it's different. I'm still her daughter, whether I'm an adult or not! I still have AS, and I'm still struggling! I guess this shouldn't surprise me though. She has never seemed to care about things that inconvenience her in any way, or take even a little effort on her part, especially when it comes to me. I am not asking for anything more than for her to be understanding, and maybe even tell me that she loves me no matter how I am, flaws and all, and that it's safe to just be myself. That is just not the kind of mother she is though I guess. I used to think all moms were like her until I started going to friends houses and seeing how their mothers loved and cared about them no matter what. Like they could do no wrong in their mothers eyes. I wanted that so badly, and still do! Their mothers weren't making fun of them, or disappointed in them if they weren't good at something. At least one good thing that has come out of this, is that I know exactly how NOT to treat my daughter. I remind her every single day that I love her so much and nothing she can ever do will change that.

Dreams

I have had a rough day today. Not for any particular reason, just extra sensitive to noise, and haven't been feeling well. I have Fibromyalgia, and have developed thyroid issues recently, so on the days I am having "flare ups" I am so much more sensitive to noise, smell, touch, everything. But anyway, I want to talk about dreams. I am a little hesitant to go to sleep tonight because I have been having such crazy dreams lately. Last night I had a very vivid nightmare and it seemed to stick with me throughout the day. It kind of set the tone for my day I guess you could say.

I have always had extremely vivid dreams. Most of the time, I don't mind it. Like when I have dreams about nice things of course. But when I have nightmares that feel very real, then I most definitely do mind it! I have all different kinds of dreams. Last week I dreamt that my family and I were being chased by a "pack" of Bears(I don't think bears even come in packs..?). Anyway, they were coming at us so fast and we couldn't escape no matter where we went to try and hide. They were breaking windows to get into the house and what not. Also, my daughter kept escaping out the back door for some reason and I kept trying to get to her but couldn't. I have had dreams that my husband was cheating on me, and I would wake up so pissed off at him because the dream felt so real. And sometimes dreams like that will stick with me all day (like Deja Vu) and I will have an attitude towards him, or be standoffish because even though I consciously know it was only just a dream, I can't get rid of that feeling of hurt that I felt in the dream about him. And I have absolutely no reason to think he would cheat on me. My husband is amazing, and very loyal. But like I said, when it happens in my dream, it makes me look at him a little differently that day, and I even become a little paranoid if for example, he says he has to work late. Usually I would not think anything of that, but if it's the day after one of those crazy dreams, I get flashbacks of the dream. Wierd, I know..

My dreams also almost always contain water in some way or another. I am either going down a river, trying to get to the other side of a river, in/on a lake, walking through a couple feet of water while doing normal things..etc. I'm not sure why my dreams usually involve water in some way, but they do. I have always loved water, especially as a child, so maybe that is the reason..?

I also used to always have scary dreams about leaving my daughter somewhere on accident(which I've never ever done by the way, just to clarify), or that I can't get to her. When she was a baby until around 3yrs old, I would always have this recurring nightmare that I left her in the car when it was freezing outside. And in my dream, when I walked outside to get her, her head was covered in icicles. She was still alive, but her hair was full of ice.

Anyway, I'm not sure if this vivid, complex dreaming I've always done is an Aspie thing or not.. So please feel free to leave a comment, especially if you dream like me! Thanks :)

Socializing

 

Hope everyone had a great weekend!  Although I had a lovely weekend, and wouldn't change a thing about it, it was also extra busy and full of socializing because of the holiday. And if you're anything like me, you know that socializing=exhausting!  I am constantly thinking about what I should say next, how I should say it, how people will take what I say, and just what people think of me in general(and the list goes on of course..).

 My husband always tells me I "think too much into things", and he's absolutely right!  But I guess that's just an Aspie thing in general from what I've read recently, and from what therapist tells me. I have a very hard time when speaking to others, and get very nervous. Although you might not know it, because when I'm nervous I start rambling and without realizing it I end up dominating the conversation. I was very very quiet and shy as a child, and didn't talk much at all to anyone outside of my immediate family. I had no interest getting to know other kids. Being around other kids my age got my stomach in knots and I can even remember getting tightness in my chest around age 5 when it came to being in public or being forced to be around other kids. I chose to just sit by myself and not associate with anyone. Other kids would approach me and try to make friends, but I just wanted to be by myself. Even thinking about talking to them was like an intense fear. I never felt like I fit in, and honestly, I don't think I ever will.

I think over the years I have learned how to act in social situations by watching others for a majority of my childhood. But it is all an act. It's a facade. The person I portray  in front of others is not myself. It's who I think others want me to be. Or who I think I should be. Which is usually anyone other than myself. And I'm not always successful in doing so. It's one of the reasons why I don't have any close friends. Too exhausting to put up a front all the time, among other things. When I'm around anyone other than my Husband, I'm extremely anxious. I feel like I have to hide my true self.

 I also feel like sometimes I come off as sounding "dumb" in some situations because I am so busy thinking about the "right" words to use or the "right" thing to say, and it still ends up coming out wrong alot of the time.  It also makes it difficult to listen to what the other person is saying alot of the time because I'm so nervous and busy thinking about what I should say next. And getting into words what I want to say is very difficult for me. Sometimes it feels like I'm just trapped in my own mind. I have LOTS to say, but I have a difficult time putting my thoughts into words. If I'm with someone like my husband, who I feel 100% comfortable around, who I know understands me, will never ever judge me, who I can have no filter around, and just allows me to be myself, then I just say what comes out without worrying if what I said "came out right" or "sounded stupid", because he knows I'm no dummy. And he also knows me well enough to understand what I'm saying, or what I'm trying to say even if it doesn't come out right. He is so understanding, and patient with me. He is my rock and I thank god for him everyday. He helps me feel better about myself, and builds my confidence; and that's definitely what we Aspies need in our lives, is someone who is going to build us up, not tear us down, criticize, or make fun of us. That goes for most human beings in general, but I think it's especially important for Aspies. I have lots more to say, but it's getting late, and I'm mentally exhausted from the weekend! Goodnight everyone!

Lacey G.

Sensitivity to touch

I have a hard time with being touched. It actually makes my skin crawl in some instances. When I'm going through a tough time, touching does not help or comfort me in any way. I actually think that when I'm going through a tough time, or I'm extremely stressed about something, I can't stand it even more than usual. And that's usually when people want to give me a hug, or gently rub my back in an attempt to soothe me. And bless their hearts for wanting to help, because they are not aware that I have a problem, and because I'm assuming being hugged or touched does actually soothe, or console the "neurotypical" person. But instead of bringing me comfort, it actually causes my whole body to tense up, and makes me just want to crawl out of my skin. Now a breif, quick hug I can handle. I don't love it, but it's tolerable. Now if they start lightly rubbing my back during that breif hug, I'll quickly pull away. But I've learned over the past 26 years how to pull away without making it too obvious that I just want them to get their hands off of me. And it has nothing to do with the person doing the touching(most of the time at least lol). It has to do with the sensation I feel. As I said before, I cannot tolerate light touch. But actually, with a certain amount of firmness it can be ok(on occasion). Which is why I think I'm okay with the brief hug because there is usually a decent amount of firmness involved, and not alot of light rubbing. My Husband has learned over the years how to deal with me and my sensitivity to touch, among other things, and I commend him for being so patient and understanding with me.

Now this is where having Asperger's interferes with my life in a very negative way..

My daughter always wants to cuddle, and I feel terrible because I have such a problem with being touched that it get's in the way of bonding with my daughter in some ways. She's 5yrs old. She is very sweet, and loves cuddling. Most people would say "just do it, she's your daughter and her needs come first, not yours". And I AGREE. My child's needs should come before mine. And for the most part they do. But that's what sucks so insanely bad about being this way, is it just doesn't seem to be something I can control or change about myself. It's like the wiring in my brain only allows for a certain types of touch, and I have to be in control. Now I'm not saying I never sit with my daughter and hold her, or cuddle with her, because I most definitely do, ALOT. But if she catches me off guard, or comes up to me for instance, and lightly grazes my arm saying "I want to cuddle", I can't handle that type of "light" touch (for example where she's pretending to be a kitty and rubbing on me). But instead of telling her "Please don't touch me", I just say, "Honey, Mommy's not feeling so good right now..how about you let me finish up what I'm doing, and then I will hold you ok?" I just want to be the best Mom that I can possibly be, and there are so many ways that AS gets in the way of that.

 Now, even though I have struggled with these issues all my life, it took 26 years to be officially diagnosed, and I still have alot to learn about AS, and how to cope, so if anyone has any tips or advice on ways that I can make the sensitivity of being touched more bearable, at least for my daughter, please leave a comment. It would be greatly appreciated! Thanks!

Lacey G.

Females with Aspergers Non-Official Checklist

Females with Aspergers Non-Official Checklist

By Samantha Craft of Everyday Asperger’s, March 2012

This is a non-official checklist created by an adult female with Asperger’s Syndrome who has a son with Asperger’s Syndrome. Samantha Craft holds a Masters Degree in Education. Samantha Craft does not hold a doctorate in Psychiatry or Psychology. She has a life-credential as a result of being a female with Asperger’s Syndrome and being a parent of a child with Asperger’s Syndrome. She has created this list in an effort to assist mental health professionals in recognizing Asperger’s Syndrome in females.

Suggested Use: Check off all areas that strongly apply to the person. If each area has 75%-80% of the statements checked, or more, then you may want to consider that the female may have Asperger’s Syndrome.

Section A: Deep Thinkers

1. A deep thinker

2. A prolific writer drawn to poetry

3. Highly intelligent

4. Sees things at multiple levels including thinking processes.

5. Analyzes existence, the meaning of life, and everything continually.

6. Serious and matter-of-fact in nature.

7. Doesn’t take things for granted.

8. Doesn’t simplify.

9. Everything is complex.

10. Often gets lost in own thoughts and "checks out." (blank stare)

Section B: Innocent

1. Naïve

2. Honest

3. Experiences trouble with lying.

4. Finds it difficult to understand manipulation and disloyalty.

5. Finds it difficult to understand vindictive behavior and retaliation.

6. Easily fooled and conned.

7. Feelings of confusion and being overwhelmed

8. Feelings of being misplaced and/or from another planet

9. Feelings of isolation

10. Abused or taken advantage of as a child but didn’t think to tell anyone.

Section C: Escape and Friendship

1. Survives overwhelming emotions and senses by escaping in thought or action.

2. Escapes regularly through fixations, obsessions, and over-interest in subjects.

3. Escapes routinely by daydreaming.

4. Escapes through mental processing.

5. Escapes through the rhythm of words.

6. Philosophizes continually.

7. Had imaginary friends in youth.

8. Treated friends as "pawns" in youth.

9. Obsessively thinks about if she did, or said, the right things after a social encounter.

10. Makes friends with older or younger females rather than same age.

11. Obsessively collects and organizes objects in childhood.

14. Escapes by playing the same music over and over.

15. Escapes through a relationship (imagined or real).

16. Escapes through counting, categorizing, organizing, rearranging.

17. Cannot relax or rest without many thoughts.

18. Everything has a purpose.

Section D: Comorbid Attributes

1. OCD (Obsessive Compulsive Disorder)

2. Sensory Issues (sight, sound, texture, smells, taste)

3. Generalized Anxiety

4. Sense of pending danger or doom

5. Feelings of polar extremes (depressed/over-joyed; inconsiderate/over-sensitive)

6. Poor muscle tone, double-jointed, and/or lack in coordination, flexibility

7. Eating disorders, food obsessions, and/or worry about what is eaten.

8. Irritable bowel and/or intestinal issues

9. Chronic fatigue and/or immune challenges

10. Misdiagnosed or diagnosed with other mental illness and/or labeled hypochondriac.

11. Questions place in the world.

12. Often drops small objects

13. Wonders who she is and what is expected of her.

14. Searches for right and wrong.

15. Since puberty, has had bouts of depression.

16. Rubs fingertips/nails on certain textures, flaps hands, rubs hands together, tucks hands under or between legs, keeps closed fists, keeps toes curled, and/or clears throat often.

Section E: Social Interaction

1. Friends have ended friendship suddenly and without person understanding why.

2. Tendency to over-share.

3. Spills intimate details to strangers.

4. Raised hand too much in class or didn’t participate in class at all.

5. Little impulse control with speaking when younger and possibly into adulthood.

6. Monopolizes conversation at times.

7. Brings subject back to self.

8. Comes across at times as narcissistic and controlling. (Is not narcissistic.)

9. Shares in order to reach out.

10. Sounds eager and over-zealous at times.

11. Holds a lot of thoughts, ideas, and feelings inside.

12. Feels as if she is attempting to communicate "correctly."

13. Obsesses about the potentiality of a relationship with someone, particularly a love interest.

14. Confused by the rules of accurate eye contact, tone of voice, proximity of body, stance, and posture in conversation.

15. Conversation can be exhausting.

16. Questions the actions and behaviors of self and others, continually.

17. Feels as if missing a conversation "gene" or thought-"filter"

18. Trained self in social interactions through readings and studying of other people.

19. Visualizes and practices how she will act around others.

20. Practices in mind what she will say to another before entering the room.

21. Difficulty filtering out background noise when talking to others.

22. Has a continuous dialogue in mind that tells her what to say and how to act when in a social situations.

23. Sense of humor sometimes seems quirky, odd, or different from others.

24. As a child it was hard to know when it was her turn to talk.

25. She finds norms of conversation confusing.

Section F: Finds Refuge when Alone

1. Feels extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house.

2. One visitor at the home may be perceived as a threat.

3. Knowing logically a house visitor is not a threat, doesn’t relieve the anxiety.

4. Feelings of dread about upcoming events and appointments on the calendar.

5. Knowing she has to leave the house causes anxiety from the moment she wakes up.

6. All the steps involved in leaving the house are overwhelming and exhausting to think about.

7. She prepares herself mentally for outings, excursions, meetings, and appointments.

8. Question next steps and movements continually.

9. Telling self the "right" words and/or positive self-talk. Doesn’t often alleviate anxiety.

10. Knowing she is staying home all day brings great peace of mind.

11. Requires a large amount of down time or alone time.

12. Feels guilty after spending a lot of time on a special interest.

13. Dislikes being in a crowded mall, crowded gym, or crowded theater.

Section G: Sensitive

1. Sensitive to sounds, textures, temperature, and/or smells when trying to sleep.

2. Adjusts bedclothes, bedding, and/or environment in an attempt to find comfort.

3. Dreams are anxiety-ridden, vivid, complex, and/or precognitive in nature.

4. Highly intuitive to others’ feelings.

5. Takes criticism to heart.

6. Longs to be seen, heard, and understood.

7. Questions if she is a "normal" person.

8. Highly susceptible to outsiders’ viewpoints and opinions.

9. At times adapts her view of life or actions based on others’ opinions or words.

10. Recognizes own limitations in many areas daily.

11. Becomes hurt when others question or doubt her work.

12. Views many things as an extension of self.

13. Fears others opinions, criticism, and judgment.

14. Collects or rescues animals. (often in childhood)

15. Huge compassion for suffering.

16. Sensitive to substances. (environmental toxins, foods, alcohol, etc.)

17. Tries to help, offers unsolicited advice, or formalizes plans of action.

18. Questions life purpose and how to be a "better" person.

19. Seeks to understand abilities, skills, and/or gifts.

Section H: Sense of Self

1. Feels trapped between wanting to be herself and wanting to fit in.

2. Imitates others without realizing.

3. Suppresses true wishes.

4. Exhibits codependent behaviors.

5. Adapts self in order to avoid ridicule.

6. Rejects social norms and/or questions social norms.

7. Feelings of extreme isolation.

8. Feeling good about self takes a lot of effort and work.

9. Switches preferences based on environment and other people.

10. Switches behavior based on environment and other people.

11. Didn’t care about her hygiene, clothes, and appearance before teenage years and/or before someone else pointed these out to her.

12. "Freaks out" but doesn’t know why until later.

13. Young sounding voice

14. Trouble recognizing what she looks like.

Section I: Confusion

1. Had a hard time learning others are not always honest.

2. Feelings seem confusing, illogical, and unpredictable. (self’s and others’)

3. Confuses appointment times, numbers, or dates.

4. Expects that by acting a certain way certain results can be achieved, but realizes in dealing with emotions, those results don’t always manifest.

5. Spoke frankly and literally in youth.

6. Jokes go over the head.

7. Confused when others ostracize, shun, belittle, trick, and betray especially as a child.

8. Trouble identifying feelings unless they are extreme.

9. Trouble with emotions of hate and dislike.

10. Feels sorry for someone who has persecuted or hurt her.

11. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity.

12. Situations and conversations sometimes perceived as black or white.

13. The middle spectrum of outcomes, events, and emotions is sometimes overlooked or misunderstood. (All or nothing mentality)

14. A small fight might signal the end of a relationship or collapse of world in her eyes.

15. A small compliment might boost her into a state of bliss.

Section J: Words and Patterns

1. Likes to know word origins.

2. Confused when there is more than one meaning to a word.

3. High interest in songs and song lyrics.

4. Notices patterns frequently.

5. Remembers things in visual pictures.

6. Remembers exact details about someone’s life.

7. Has a remarkable memory for certain details.

8. Writes or creates to relieve anxiety.

9. Has certain "feelings" or emotions towards words.

10. Words bring a sense of comfort and peace, akin to a friendship.

(Optional) Executive Functioning This area isn’t always as evident as other areas

1. Simple tasks can cause extreme hardship.

2. Learning to drive a car or rounding the corner in a hallway can be troublesome.

3. New places offer their own set of challenges.

4. Anything that requires a reasonable amount of steps, dexterity, or know-how can rouse a sense of panic.

5. The thought of repairing, fixing, or locating something can cause anxiety.

6. Mundane tasks are avoided.

7. Cleaning may seem insurmountable at times.

8. Many questions come to mind when setting about to do a task.

9. Might leave the house with mismatched socks, shirt buttoned incorrectly, pants or top on backwards.

10. A trip to the grocery store can be overwhelming.

11. Trouble copying dance steps, aerobic moves, or direction in a sports gym class.

12. Has a hard time finding certain objects in the house, but remembers with exact clarity where other objects are.

This list was compiled after nine years of readings, research, and experience associated with Asperger’s Syndrome. More information can be found at http://aspergersgirls.wordpress.com © Everyday Aspergers, 2012 This non-official checklist can be printed for therapists, counselors, psychiatrists, psychologists, professors, teachers, and relatives, if Samantha Craft’s name and contact information remain on the print out.

　

Stimming

According to my mom, I have always had "tics" and "habits", as she would call them. My therapist tells me these things I used to do, and some that I still do are called "stims" and just another part of having Asperger's...

*I used to chew on the sleeves of my clothes constantly.

*I went through a phase where I sucked on my hair.

*I sucked my left index finger to help me fall asleep until I was about 14.

*When I was younger I would shake my hands(I have recently been informed that this is considered "flapping"), and it would usually be when I was in public because being in public made me VERY nervous. I had such an intense fear of being around lots of people. I would also shake them when I was excited about something. Anyway, I would shake them the way people shake their hands after they wash them but there is no papertowels or hand drier so they shake them dry(best way I can think of to describe it). My grandma would always tell me "Stop that Lacey, or people will think you have a mental problem". But it wasn't something I consciously thought about doing really. Anyway, after my grandma yelled at me so many times to stop and I became aware of what I was doing, I got better at catching myself in the act so I could try and stop. My Husband just this past weekend pointed out that I was "hand flapping" and told me I have done that for the last 7yrs we have been together every time I'm extremely anxious about something. And I do remember him mentioning it a couple times like saying "I've never seen anyone do that before". But like I said, it's just not something I consciously think about doing

*I have had a "blankie" for as long as I can remember(I know, I know, I am 26yrs old and still have a "blankie"..don't judge). It's not that I have an attatchment to this particular object, as much as it is an attatchment to the feeling it gives me, and the calming effect. I am now on my third "blankie" because the first two disintegrated, and it has pretty much the exact same texture that the first 2 had. That's why I say I don't think that it's that I'm attatched to the blankie as an object. What is important is the texture, and how it feels when I rub it with my fingertips/nails. It's like "pilly" and "rough". Fabrics like silk or that are extremely soft just won't do. I cut a peice of my blankie and sewed it onto an elastic hair band, and attatched a string to it, then sewed my blankie onto it so that people wouldn't be able to see what I was doing in public because let's face it, it is pretty weird for a woman like me, who is 27yrs old to have a "blankie", let alone need to "rub her blankie" when she's out in public. But with my pretty genius idea of making it blend right in, I can still rub it whenever I want.. It brings me comfort, and it actually seems as though I'm addicted to it in a way. If I lose it I flip out! It's like a drug, and when I lose it I feel out of control in a way. I panic. I don't know if anyone else has something like this, but if so I would love to hear about it so I know I'm not alone! :)

*From age 8-11, I used to do cartwheels back and forth in our living room for hours after school. Just back and forth and back and forth without stopping or pausing at all. It made me feel dizzy in a good way, and just thinking about it right now makes me wish I wasn't so sick, and didn't have horrible vertigo everyday so that I could do them right now. It was like a neurological itch that needed to be scratched. We had a very small house so the living room was the only place where there was enough space, or room, for me to do the cartwheels. So when my dad would come home I had to stop because he wanted to watch TV of course, so I couldn't be doing them in front of the TV obviously. My mom thought the cartwheel thing was a little odd but as long as I wasn't bugging or bothering her she didn't really care..

*Swinging. Swinging on the swings in my backyard also gave me that feeling. I would go out in our backyard by myself and just swing for hours until I was told I had to come inside. The back and forth, back and forth was comforting.

*I love rocking chairs because I love the way rocking makes me feel. And when I was younger, my mom would yell at me for rocking back and forth so a rocking chair was the closest thing to it, because rocking on my own just wasn't an option. It's another one of those things that scratches that neurological itch

*Within the last 2yrs I have developed another "habit" as my mom would call it. I do this thing with my neck..almost as if I'm stretching it, or trying to crack it but I'm not. It looks kind of like a "jerk" and I do it twice. My Husband says I look like a chicken when I do it. Lol. I feel like I can't help it, but it's not an involuntary movement or anything either. I technically have control over the movements, but it's like another one of those things I just feel like I have to do. I don't really know how to describe it.I'm not very good at putting how I feel into words, so I apologize if some of this makes no sense! And after I do the neck jerk thing, I usually do this little like clearing my throat/cough thing. Sometimes I do the "clearing my throat" thing by itself. My Husband and my parents noticed me doing that a couple years ago when I was going through a pretty stressful time, and they said I would do it every time I got extra stressed, or upset about something. My dad says it sounds like I'm grunting. And then sometimes I will roll/tighten the muscles in my stomach and do this weird breathing thing. Sometimes it even interferes with me speaking because it's like something I just do without thinking. Like a reflex, but my therapist says it is just another "stim". The reason I know that I can control it if I need to is because I had an MRI done about a month ago where I had to be completely, 100% still. It was definitely not easy, but I know that I had to. Anyway, I managed to not do the neck thing, cough, or tighten my stomach muscles, because if I did it would mess up the test and I could have had to start all over again.


Please feel free to share or leave a comment! Thanks! :)

Lacey G.