Category Archives: Insomnia

Basic Accomodations – I’m Not Disabled By My Autism, I’m Disabled By Unacomodating People

In an earlier post titled Autism is Not My Disability I said

“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function. The disability is society’s misunderstanding of Autistic people.”

Although I still agree with my previous statement, I’ve been rethinking this title laity and feel a strong urge to elaborate.

First I want to clarify that there are parts of Autism that are disabling.

We can have mental disabilities, epilepsy, IBS, Anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not Autism – because they differ so widely in all of us. I consider these commodities are unfortunate side effects that Autistic people encounter (too often).

These things ARE true disabilities and are often invisible – so when I say Autism is not a disability, I mean Autism as a way of thinking in itself is not a disability. This does not mean many Autistic people are not disabled.

I wish it weren’t true, but many of us are.

Personally, I am not sure if chronic illness will eventually leave me unemployed and unemployable. It is a constant fear as I scramble to get my health under control. Doctors are apathetic and if you’ve learned to act “normal” people doubt your diagnosis every time you mention it.

There are certain things I need help with, some simple accommodations that make my life easier. In work and in my personal life I tend to ask for the following (although people accuse me of being difficult) :

Sit somewhere quiet. At work I may wear headphones with music or ear plugs. Working from home is also a great option. My ears are so sensitive they pick up everything. I can’t focus on one conversation or catch all the words in a loud busy room. I like calm restaurants or off peak times.

Sit somewhere with the gentle lighting. Natural light without glares and certain soft artificial light is something I need. Modern office light is the worst. The wrong lighting or lots of glares makes me feel sick and hurts my eyes and brain. If I can’t escape I may put shades on or wear a hat indoors.

Ask for or make a plan. I like to know what’s happening and am honest about not enjoying surprises. I also need to know when things will end. Sometimes I may stay choose to late, if not, having an end time helps me to relax.

Say no to people. I am not a social person and can’t take a lot of going out. Socializing drains me like nothing else. Now that I work full time I have a hard time going out more than a few times a month. I say no to people more than they are used to but my health is important to me.

Try to get everything in writing. I have a hard time following verbal directions. Autism does impair some of my face to face communication skills. I also have impaired sort term memory and executive functioning.

When I ask for someone to put something in writing for me, it is one of the most important accommodation that I ask for. My reading level is FAR above what I can take in though speech. This helps ensure I don’t skip any important details.

Special treatment. It’s not fair for you to get special treatment.

If I am lucky people oblige me, however I get a lot of push back sometimes.

I feel like these accommodations are reasonable. When I have these things I am able to function at an optimal level. Without them I end up struggling to keep up with the basics. If you give me just a little I can go far.

I think differently and go about things in a different way. On my own this has never been a problem. My problems only appear when other people insist upon me doing things their way, insisting that I do things like everybody else.

They can’t see my disability and think I am asking for an easy way out.

They can’t understand how badly I need to do things my way and don’t see how much I struggle without accommodations. They are hard to get especially in the work place.

All I want is to do my best.

My Autism is not my disability – unaccommodating people are.

 

 

 

Medical Cannabis & Autism – You Asked My Opinion (The Blog I’ve Been Avoiding)

Over the past year that I’ve had my blog people have been emailing asking for my opinion on the use of cannabis or marijuana as a possible treatment for Autism.

To be perfectly honest with you, all of my readers, I have been avoiding this topic.

Here is why – I don’t have first hand experience with this so I don’t feel like an authority on the subject. I don’t live in a state that allows Autism to be listed as a qualifying medical condition so this option is not available to me. I need to write about what I know and I don’t know enough about this.

What I would like to share is that parents have reached out to me to let me know that they have had some amazing results. Other parents email to ask if I know about this treatment but all I can say is this – I am not a doctor and cannot give medical advice.

So once again, I am not a doctor and can not give medical advice so please do not take anything I say as such.

If you want my opinion on medical marijuana and Autism all you have to do is search “cannabis autism” on YouTube.

Watch the videos, especially the ones with severely affected Autistic children.

If you can not stop crying while watching those videos than you know exactly my position on this issue.

I am deeply troubled that there might be people missing out on one thing that might help ease extreme suffering, especially when many drastic things have already been tried.

Those videos may hook you in and after that you may find yourself watching the videos about medical cannabis and seizures. I can’t watch these videos either because I know many children with severe seizure disorders, who are not helped by mainstream medications, die at a young age.

I am also saddened by medical refugees and people stuck without access.

I can’t watch these videos any more. The truth in them is so penetrating that it makes me physically ill. People say Autistic people don’t feel things but as an adult I feel them more deeply than a lot of people. It is beautiful and painful all at the same time.

That is my opinion on medical cannabis for Autism – I am heart broken.

Heart broken about all the suffering that’s happened over the years in relation to this plant for no good reason. People are sick, dying, in prison, families torn apart. There has to be a better answer.

Can I advocate for medical marijuana as an Autism treatment? I don’t know. I am not a scientist or a doctor.

What I can advocate is everyone doing their own independent research. There is still a lot we do not know about this plant. One thing I can say is it doesn’t seem to be as dangerous as people wanted us to believe back when they made it illegal.

I know cigarettes kill people and alcohol is much worse but is a big part of our culture.

Just facts. That’s all I’ve got since I can’t make this one more personal.

Mental Health & Chronic Illness – Things People Don’t Understand

Toughen up – that phrase makes my arm hairs stand on end… my family members said it a lot, so did my teachers. Stop calling me weak – on one hand I hate being told that.  Regardless, coming from my mother it did me good and helped me become the person I am today.

The other one that REALLY gets me is “you’re not trying hard enough”. This is the worst thing you could ever say to someone who is doing there honest best. It’s soul crushing. It doesn’t matter your intentions – I hear “your best is not good enough“.

Certain simple things like timing in conversation trip me up. My brain is working overdrive but still I make simple mistakes. Because I can be extremely skilled at complex tasks people say things like – “you are too smart for this” & “you are not trying hard enough”.

On the inside I am dying because my best is perceived as laziness. I’m working so hard –Not trying? They can not comprehend how difficult this is for me.

People assume I am being rude and I rub them the wrong way. I’ve been told I can be perceived as standoffish and distant – not really what I’m going for. It keeps people away.

I am very isolated because of my limited social skills. My awareness of my social impairments has helped me to develope severe Social Anxiety.

I don’t go out, I don’t socialize – I get more than enough human interaction (the wrong, over stimulating, kind) at work. Other than going to the office, I never go anywhere without my husband.  He is my rock and is wonderful to me. He seems to pick up on the things that I miss. We compliment each other nicely.

I don’t bond with many people, but the people who I do bond with have my loyalty till the end. When you can’t read people and tend to be gullible you have to guard your inner circle. I don’t want to let a snake in the hen house.

My co-workers are all wonderful but unfortunately we are never on the same page. They go out, they dance, they drink (a LOT), they get loud and crazy. None of that appeals to me one bit. They care about brands and dinners at expensive restaurants – I feel like these things are a waste of money. I don’t know how to talk to them because we have nothing in common.

My thoughts are on my mortgage, family, my current obsession, and saving for days when I may no longer be able to work. I can’t throw money away like they do – I don’t have money to waste.

The risk of loosing work is high when you have a chronic illness. If you use too many sick days your boss will fire you. I am healthy enough to work right now but I don’t know if this will always be the case.

There was a time years ago when I was sick 3 days a week – the beast. I fear it’s return more than anything.

I am “disabled” but not on any disability. I don’t have supports other than my husband’s care. I’ve been disabled to the point where I really could not live a good life before – it was horrible and I never want to do it again.

If I get sick I will lose my job and my home. More than anything my home is my safe place. Living in apartments was hell with my sensory sensitivities. Maintenance men insisting they have to fix something are not something I can deal with on high sensory days – neither are loud neighbors.

Having my own place is essential to my mental health and having a job is essential to having a home.

I also spend more out of my own pocket for medical expenses than most people. Almost every doctor I need to see is always a specialist who is “out of network”. I don’t get all the recommended medical things done because the costs have gotten ridiculous.

I have to eat organic and gluten free because the chemicals and gluten make my stomach violently ill. I am chemically sensitive – something that is common in people with AS that I speak to.

Money is always tight but we are getting by. I am trying my hardest to keep everything in balance.

All I can do is take care of myself and hope for the best.

Weighted Blankets – Princess Aspien

I’ve suffered with chronic insomnia my entire life.

I used to sleep under sofa cushions and pillows as a child and now, because I cannot sleep unless I have a heavy (not weighted) blanket over me – EVEN IF I AM HOT.

Being squeezed tight and makes me feel calm. Those weighted blankets are a bit expensive, so I don’t have one but I definitely want one!

Princess Aspien has another video (which I can take no credit for). I am super addicted to her channel. Please subscribe and check out her video explaining her experience with using weighted blankets to help her insomnia.

Melissa McGlensey – 14 People With Sensory Processing Disorder Describe What It Feels Like – The Mighty

I’ve been really addicted to reading on The Mighty’s website. They have created a positive and supportive webpage filled with great stories and advice for others who live through the struggles that many of us face from day to day.

In the following article, which I can take absolutely NO credit for, Melissa McGlensey of The Mighty, shares how people describe what Sensory Processing Disorder feels like.

“It’s like having the worst hangover you can imagine. The rustle of newspaper can make your ears buzz the same way they would if you were listening to really loud music. People talking can make you cringe because it sounds so loud. Sunlight can literally feel like you are blinded. At my worst, I cannot tolerate any light. It’s like your brain is going to explode because it can’t handle the stimulation. It’s really scary, upsetting and can make one very anxious.” — Hay Green

“All of the sensory input your mind normally tunes out can start to overwhelm your conscious mind. It’s like when you become aware of your blinking and notice every blink for a few seconds, but more extreme. Trying to push past the hyper-awareness of every noise and touch will take away any amount of patience and attention you had for what you were doing. It makes it very hard to interact ‘normally’ because you are so caught up in your own head.” — Elizabeth Engel

“Suddenly everything is too loud, too bright, too much, and you just want to run to a dark, quiet corner to curl up in for hours.” — Sarah Whiting

Please be sure to follow The Mighty on Facebook and check out the full article here.

 

 

 

I Said No (To Something I’d Been Looking Forward to)

Every time I publish a blog about being tough and pushing yourself, there are always comments complaining that I am not paying enough attention to self care.

Yes it is possible to practice self care while pushing yourself. I do it every single day.

In the morning, when my sensory issues bother me the most, it is hard for me to get out of bed but I PUSH myself to do it anyway because I know the pain is only temporary. I try to brush my teeth, because doing so is good for me, but if the sensation is too much to handle on any given day I will stop.

I like to touch my limits, but I am very careful to be respectful of them. Pushing too far is not helpful to anyone.

Some things just suck too much to push through, like last night. I awoke to a spinning room and gargling stomach just after two am. Finally, after four hours of vomiting,  I am able to fall asleep.

When I wake up at eight I feel much better but my stomach is still tender and my body weak. I’d been looking forward to going out to lunch with my friend, but I  texted her to reschedule this morning. Today I need to rest and take care of myself. I also need to work (thank goodness I work from home).

Once again pushing myself while being respectful to what my limits are at this moment. I can handle working from home under a pile of blankets right now, but would not be able to handle doing anything in public.

Pushing. Pulling. Finding the right balance and never giving up.

 

 

Why Medical Cannabis Helps ASD

As a person with Asperger’s / on the Autism Spectrum, it is very hard for me to simply except that something works without understanding why and knowing all of the facts.

After experiencing the near miraculous effects of CBD hemp oil on my stomach and insomnia, I’ve been doing a lot researching  about the medicinal properties of cannabis.

The more I dig, the more I realize that there are some things about this naturally occurring plant that our government and the medical industry may not want us to know. It is impossible for me to ignore the things that I am finding, and I feel obligated to speak out against the lies that many of us have been told for some time.

Medical cannabis is big business but keeping this amazing plant illegal is bigger business due to the lobbyists fighting to prevent access to this medicine.

This is NOT a medical marijuana blog.  This is an Autism blog. The more I dig, the more I realize that these two issues are somehow connected.

In a video that I watched earlier this afternoon there is some discussion and explanation as to why this plant seems to be helpful for Aspies and people like me. Please feel free to watch the video in its entirety, however I have started it where it is most relevant to those with AS.

Upscale TV Episode 3 – Wonderful World of Medical Hemp & CBD by Upscale Media

Watch video here.

More videos and links can be found here.

Autistic Comorbids

Many people on the Autism Spectrum have other comorbid disorders (myself included). Below are a few things that bother me even now as an adult.

Anxiety – I live in a near constant state of anxiety. The only thing that helps is my overly logical mind. I can normally “out logic” my anxiety and then distract myself. When a panic attack occurs, I can sit “calmly” on the outside and nobody would ever know anything was wrong (unless they noticed that I was a bit spaced out or tried to get me to talk).

Insomnia – my entire life. I have a hard time falling asleep and wake often. If I know that I have to get up earlier than usual in the morning my anxiety will keep me up all night in anticipation. Getting out of bed is also extremely difficult because I still feel tired.

Gastrointestinal / bowel disorders – I’ve always had problems with my stomach, as long as I can remember. There are certain foods that can trigger a horrible vomiting attack, but the main thing that seems to cause this is stress. It is possible that my stomach illness are what happens in the most extreme version of a “meltdown” but that is more of a theory for now.

Attention-deficit hyperactivity disorder (ADHD) – My teachers tried to convince my mother that I had ADHD in elementary school. I am easily distracted and have a hard time focusing on things that I am not interested in. My mind wanders off. However I have hyper-focus while working on tasks I enjoy. Luckily my mother refused to have me evaluated for ADHD because she did not want me medicated. I honestly think this is just part of the AS personality type.

Depression – it runs in my family and I now believe this is actually Autistic Burnout.

Sensory problems – most of us have these. Mine seem to worsen and become more intense when I am tired, but there are certain things I can never tolerate for long. Certain lights give me headaches and hurt my eyes. I can NOT handle the feeling of a manual toothbrush in my mouth or getting my nails filed. Also there is only a few types of socks that I can wear.

Nonverbal learning disorder – People with this disorder may not at times comprehend nonverbal cues such as facial expression or tone of voice. Has trouble interpreting nonverbal cues like facial expressions or body language and may have poor coordination. (Yes, Yes, and YES!)

Obsessive-compulsive disorder –  I have more obsessions than compulsions. Most of the time I am able to mentally talk myself out of doing something that I fell heavily compelled to do. (Although the nagging thoughts / urge to do something can linger on until I find something else to occupy my mind.)

“Obsessions themselves are the unwanted thoughts or impulses that seem to “pop up” repeatedly in the mind. These intruding thoughts can be fears, unreasonable worries, or a need to do things. When a person is tense or under stress, the obsessions can worsen.

Compulsions are the behaviors that may result from the obsessive thoughts [. . .] Compulsions may be rituals, repeating certain actions, counting, or other recurrent behaviors.”

Epilepsy  / Seizures – I have only ever had one seizure and it was at a time where I had way too much stress in my life. Perhaps this was brain overload in its most extreme form.