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Thread: Joys and Sorrows of Living with Adult Autism (Autism Awareness and Accomodations)

  1. #1

    Joys and Sorrows of Living with Adult Autism (Autism Awareness and Accomodations)

    Dear Arkansas Nurses,

    I have written a book Joys and Sorrows of Living with Adult Autism about my first 6 years of marriage to an autistic man. There is a large section in this book about my husband's encounters with hospitals, doctors, and nurses. I would like to educate nurses about my husband's end of the autism spectrum. He is very intelligent but socially and emotionally he is like a 2-year-old in a man's body. He has many special needs and has to have the following accomodations when he goes into the hospital for a procedure. He needs to have all female nurses. Men torchured and made fun of him with needles as a child and men make him nervous. Also he needs to be mothered through procedures and men cannot do this. When he gets an IV stick he needs to have one nurse do the IV stick while another nurse holds his hand and then rubs the top of his head when he starts hyperventillating, screaming, and crying over the stick. These both need to be very happy-go-lucky nurses and all of his nurses need to have happy-go-lucky personalities. Once he finds a nurse he likes or nurses he likes he needs to get the same IV helper everytime and the same in-patient nurses everytime he goes into the hospital. Also, unlike Temple Grandin who doesn't like to be touched my husband craves touch and hugs everybody he likes. He needs to be allowed to hug all his favorite nurses and them hug him back. The happy-go-lucky nurses need to be naturally happy-go-lucky to start with not just somebody serious pretending to be that way. My husband will be able to tell the difference and it will make him very uncomfortable. Serious acting nurses tend to make his scary situation seem even scarier than it already is because they remind him of just how bad his situation is. You need to have compassion on him and be as gentle with needles as possible when sticking him because an IV feels like a butcher knife to him, a blood test feels like a steak knife, and a catheter feels like a sword being stuck in him.

    Also, he must be knocked out completely with the gas for all invasive x-rays or procedures or surgeries. He cannot be awake for it or even a little woozy. He will freak out. Even if all you want to do is insert a catheter in him you have to knock him out completely with the gas first or he will freak out and will be in excruciating pain beyond comprehension. He must not be awake for this.

    It is better to give him the gas first but since some hospitals insist on the IV first he needs to have one to do the stick and the other to comfort him and they both need to be happy go lucky females and they need to be the same two people every time he has to go into the hospital because my husband does not like change and he is uncomfortable with having someone different everytime. They need to be the same one.

    Also, there was one time my husband got in trouble at a hospital for writing his favorite IV nurse because a Director of Speech Pathology got the wrong idea about him when he asked for a female therapist when trying to get language therapy and called and chewed my husband out about having a note to meet with his Speech Pathologists. My husband freaked out as a result and wrote all the therapists letters about why he wanted a female and tried to explain everything from his childhood to the present about how mean men were to him at school and in hospital settings and how this justified his asking for a female therapist. Then the director called him a second time and asked him not to write his therapists again and rubbed it in that his therapist would be the guy therapist when he came. My husband felt this man had it in for him because he reminded him of an elementary school teacher who tried to ruin his reputation with other teachers and thought this director might turn his nurses against him, especially his favorite IV helper considering the fact the man the director reminded him of tried to turn his favorite 7th grade Special Ed English Teacher against him. He also had a bad experience in college and feared this IV helper would say the bad things to him that some mean girls had said to him in his past and he repeated what they had said to him and put their words in the IV helper's mouth. The IV helper not knowing what was going on since my husband did not think to explain where he was getting his statements from apparently callled the police. I went to the hospital after his next Urology appointment and tried to talk to her but after she told us to wait for her till 2:30 the police came and frisked him in the hall and then took him down to question him downstairs but they did not believe me when I told them why we were there? After this we were escorted out of the hospital and asked not to come back. We found out later his doctor thought he was stalking his favorite IV nurse when all the time he was just begging for mercy. So next time you run into somebody that acts odd in this way find out if their autistic first. We did not know until 1 week after this that he had Autism but we did know he had autistic tendencies. It just hadn't been diagnosed yet. This did not affect the hospital's decision and it was too late to explain things by the time we found out he had Autism for sure. So, please the next time something like this happens, don't jump to conclusions find out if their autistic first.

    I would like to go to hospitals to do talks for nurses on my husband's end of the autism spectrum to help them understand him and those like him on his end of the spectrum. If you could, please e-mail me at or go to my website at Joys and Sorrows of Living with Adult Autism | Adult Autism or call me to set up an appointment for a nurse talk at (870)423-6112.

    If you go to my website please sign my guestbook while you are there and go to the Nurse's page on my website to see my words to nurses I wrote. Thank you for going to visit my website and please let me know what you think when you're done reading it.

    In Christian Love,

    Big Bertha Evans

  2. #2
    Member Extraordinaire
    Join Date
    Feb 2005

    Re: Joys and Sorrows of Living with Adult Autism (Autism Awareness and Accomodations)

    You have posted the same information already on this site- on several different threads....

  3. #3

    Re: Joys and Sorrows of Living with Adult Autism (Autism Awareness and Accomodations)

    Dear Amanda,

    The reason I made the same post to Arkansas nurses is because me and my husband live in Arkansas and only two of the hospitals in our area know and understand his situation. I wanted to be able to educate all the nurses of all the hospitals in the state of Arkansas because in many cases the local hospitals send their patients to other hospitals in the area all over a 100 mile radius and you never know for sure which one they might be sent to. If you have to go to a specialist you are liable to be sent to Fayetteville, Rogers, Springdale, Harrison, or other towns in Northwest and Central Arkansas and even Springfiled, Missouri in many cases. I've been to Hot Springs myself and St.John's in Springfield.

    Since the hospitals in these towns and others with the exception of the Harrison Hospital do not know my husband's situation, I would like to let them know what to expect before my husband ever gets there in case he is sent to one he has not been to before and they fail to understand him because of his Autism. I'm hoping that Arkansas nurses will read and respond to this post and not just nurses clear across the country from me like Wisconsin or Florida. I'm hoping that this helps nurses in Arkansas understand my husband's end of the Autism spectrum so that he or any one on his end of the spectrum will not be taken the wrong way. Hopefully, this will help.

    In Christian Love,

    Big Bertha Evans

  4. #4
    Super Moderator cougarnurse's Avatar
    Join Date
    Oct 2006
    Parked in front of the computer when I am not working

    Re: Joys and Sorrows of Living with Adult Autism (Autism Awareness and Accomodations)

    To be honest, Bertha, this site is juuuust a bit smaller than 'some other site'; however, it IS growing....slowly, but growing none the less. To be honest, your many other posts CAN be accessed through the many Search Engines, etc., that 'hit' the site. You don't need to post that many. Thank you for being so understanding.


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