Category Archives: Epilepsy / Seizures

Basic Accommodations – I’m Not Disabled By My Autism, I’m Disabled By Unaccommodating 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.

AUTISM AND EPILEPSY – Link Between Autism And Epilepsy | The Aspie World

I’ve had seizures before but am not diagnosed with epilepsy because the seizures are rare and far between.

Personally I have known a few people with epilepsy and they both had a lot of Aspie like qualities. The behavior could also be part of being neurodivergent / neurodiverse. It will be interesting to see what science has to say but so far I am not at all surprised.

What do you think?

I LOVE The Aspie World channel on YouTube. Please check him out and subscribe for more great content. I can take NO credit for the video below.

Texas Mom Fights For Access To Medical Marijuana To Treat Autism

The following I can not take credit for, however it ended up in my news feed this morning. There is a mother out there fighting for her child, hoping to help others by defeating the controversy surrounding medical marijuana / cannabis.


 

FORT WORTH (CBS 11) — A Texas mom is fighting to give parents of autistic children the right to utilize medical marijuana as a treatment for their kids. It’s just one of the issues we’re hearing from marijuana advocates in town for the Southwest Cannabis Conference.

Thalia Michelle isn’t just trying to change Texas law; she’s helping mothers across the country try to change laws in their states with the hope of giving parents more options to treat their children.

Advocates at the Southwest Cannabis Conference are quick to point out the difference between THC, which causes the high from marijuana, and the compound CBD. When Michelle heard about cases of autistic children benefiting from CBD oil, she was able to order the medicine online and give it to her son, Lance, where they live, in Austin.

Full story and video HERE.

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.