If it’s a same day appointment without any preparation beforehand, still let them know any needs. Even if it’s not worth it to spend nearly an hour on preparing something especially for you, still let them know what might work best for you. If they need to use a speculum, ask for a small one! Even if they can’t use all their time convincing you of how convenient something might be, still tell them if you cannot do certain methods while feeling safe. Is there something on hand to relieve even a little pain? Can it be self administered at home? Can you sit in a different chair? If you cannot possibly resolve something as much as you’d like, ask for them to at least tell you what’s going on and ask how they might cope with similar sensations. Can an X-ray be done instead of a biopsy? If not, ask for them to take your concerns into account and go from there, such as a less invasive tool designed for the same purpose.
Wear a long skirt or a dress so you can just pull it up rather than take your clothes off. You can also bring a jacket or different pants to change into.
Take headphones and listen to music, explain you're nervous and would not like to hear much about what's going on but just to be told when they've started and when they've finished. Focus in on what you're listening to.
Say if it’s your first time doing a certain procedure and mention your concerns. Acknowledge you understand people don’t necessarily enjoy it for fun. Knowing can make you less anxious. It’s definitely worth asking something like ‘I do find this procedure extremely painful, could you try with a X?’ The procedure is easier for them to perform if you’re not squirming around in pain so there’s no reason for them not to at least try.
Pamper yourself. Count as you breathe. Breathe in 1-2-3-4. Breathe out 1-2-3-4. If the doctor's good, they'll keep you talking and talk to you for further distraction, and walk you through each step they take. Most of the time, certain tests don't take much longer than 30 seconds and afterwards they'll leave you alone so you can recover if you need it. Talk to them beforehand so they know you're anxious, and see what they can do to help you get through it. Knowing options are always open to you if you need it can help put you at ease.
Knowing what certain tests feel like can make it go smoother and easier to manage. Mentally walk yourself through the procedure before it happens while doing slow breathing exercises - breath in for five counts and out for five (or longer) while walking yourself through what to expect with your eyes closed. If at any point you get nervous, keep breathing and open your eyes. Once comfortable, continue through the procedure and just keep breathing.
Don’t dismiss true concerns so you can decide what might be best for you. Gather all available facts to make informed decisions with the medics. Discuss the procedure with the medic and what they will do and when it happens. While the procedure happens, ask them to explain what which thing it is they’re doing next and how it might feel. Tell them if at any point you express discomfort, they check in with you and do not proceed until you give them the green light. Make sure nothing is put in you if you have not consented to or understand the purpose of. It’ll help you stay in some control if you are allowed to say if you wanted to stop at any given time to get through it. Anyone could find any experience distressing, but one’s distress can be magnified by the facts of how they are autistic, traumatized, etc. Just like with any other condition, doctors should have to take into account a particular person in their office and adjust what they’re doing to meet the needs of said patient.
Jot down in advance everything you want to discuss to know exactly why, when and how something is to be. Ask for details and mention anything. Think about the muscles in your legs as you close your eyes. Imagine you’re at home, or think of a show. Anything to make it seem less intimidating. Give them notes you’ve taken. Ask if you can pace. Even if you aren’t a child, you still may need the catering even if you understand what medics are for. Make kits. Ask them to listen to you and to take time with you to make it more comforting. Advocate as feedback.
Depending on the procedure, meet the one treating you to see if they are a good fit for you. If they seem nice and willing, find something where you can both agree to make it better for the both of you.
If you can notify them ahead of time, mention your needs.
“I have autism which might contribute to my discomfort. What can I bring to the clinic? Can I leave my pants on, or can I wear a skirt instead of having to undress? Can you prepare smaller medical tools? Do you have sedatives? Are numbing agents readily available? Do you have a room with an adjustable seat? What’s the best treatment for me? Are there other options to make it easier to get care?”
Look up pictures of the place, visit it, read any rule policies and see if they can accommodate to getting special permission for certain aspects.
Get a personalized treatment plan.
Use telemedicine, an appointment over video, phone call or text chat, when available and appropriate.
Ask about at home tests you can send.
Tell your doctor about your worries. They might be able to help you address them.
Concerns to ask the doc if needed 😷
Although benefits can outweigh much, it’s still a worry. Even if it temporarily lasts a second, a person's pain should be taken into account. I’m not saying you should go under deep sedation just to get teeth cleaned, especially if you don’t need it. If you are having trouble tolerating certain exams, tell them to keep it in mind so the procedure can be easier on both of you. If you experience intense pain and find it hard to tolerate, request for ways to make it easier.
Thank you for taking the time to care for me (be sure to show gratitude before, during and/or after)
Can you explain the procedure to me?
How long will it take? Can we count up or down to the number?
Can you explain what you're doing as you begin to do it? Because it’s been hard in the past when X, so can we look at some techniques? Can I drink water before or during the procedure?
Do you have a heat pack or ice pack nearby? I want to get it over with and I’d like it to be easy for both of us. If you have a distraction tool (like telling jokes) to use I’d still like to let you know about X knowing my concerns will still be taken into account. Can we talk beforehand and walk me through the procedure as it will happen, step by step?
Do you have any non invasive ways to check for X? Can you do it another way instead? Do you have any smaller and/or softer instruments to get the job done? Can you apply something (like warmth, gel, etc.) to the instrument beforehand? Is there a way to get around it? Can I say if I wanted to stop (said procedure) during any time? Can I make informed decisions to decline X?
When it comes to certain exams, I’ve sensory issues, trauma, etc. Do you know any breathing exercises or any methods to accommodate my specific needs? It’s not anything personal, it’s not distrust, but I want it to go easy for both of us.
I saw a mother and daughter studying for a big test, and the daughter has a disablitity.
A man at the restraunt paid for their dinner and said, " God bless you for taking the time and working with YOUR daughter, and not paying someone else to do it".
Loving families like this GMH !
Mar 22, 2011 at 3:00am by Morgan E,
A quick look at the best at-home HPV tests
Most affordable at-home HPV test: Everlywell HPV Test – Female
Best HPV test with medical support: myLAB Box Home HPV Test Kit
Best for women under 30: NURX Home HPV Test Kit
Best for quick results: iDNA
However, some tests use a urine sample instead of a cervical
ASD affects each person differently
meaning that people with ASD have unique strengths and challenges and different treatment needs.
Therefore, treatment plans usually involve multiple professionals and are catered toward the individual.
Tue June 22nd, 2010 at 9:39pm
I work with Autistic children every week.
I work with a boy who has never spoken to me.
Today he looked me straight in the eye and said “Thank you, Samantha”
I cried so hard. He GMH
PFA TIPS: PAIN MANAGEMENT AND AUTISM
By Alizah Patterson, MD, Pediatric Resident, PL-3 , The Herman & Walter Samuelson Children’s Hospital at Sinai
Download a printable version of “Pain Management and Autism “
Sensory stimulation can be perceived very differently in people with autism spectrum disorder. It is common for children to be averse to certain types of taste, texture, and flavors. How they perceive pain, however, is not very well understood. Some people believe that people with autism may have a decreased sense of pain, but pain can manifest in different ways. Identifying and managing pain can be challenging for both healthcare providers and parents.
Methods to assess pain
Assessing pain in children can often be a challenge for providers and parents. For older children, the number pain scale is typically used with 0 representing no pain and 10 being the worst pain imaginable. The faces pain scale allows children to choose a face – images range from happy to crying – that shows how their pain is making them feel. For children who are nonverbal, the FLACC score is often utilized. This method looks at Facial expression, Leg positioning, Activity level, Crying and Consolability. This pain scale requires more time but can reliably assess pain responses in neurotypical individuals.
People with ASD or intellectual disability, or any type of cognitive impairment may express pain in other ways and may require a customized FLACC scale. This would incorporate individualized pain behaviors which is more reliable in detecting pain in individuals with cognitive impairment. Again, this would require additional time and understanding of the scale.
Research on autism and pain
Not much research has been done on the topic of autism and pain, partly due to the challenges of assessing pain in children with communication difficulty and partly due to the common belief that people with autism have decreased sensitivity to pain or a high pain threshold. Studies conducted with people with high-functioning ASD tend to use a pain scale of 0-10. On this scale, patients tend to respond with lower numbers, but other methods of rating pain have shown varying results. Some studies have used observations of providers or parents, which also tended to show decreased sensitivity to pain in children with autism.
Other studies have challenged the idea that people with autism experience less pain. These studies found that pain is expressed differently among those with autism. One study comparing children with autism, children with intellectual disabilities, and neurotypical children showed that both behavioral changes and physiologic changes (i.e. heart rate) were higher with pain, but face scores did not vary among the groups.
Some case studies have found that when asked their pain score, verbal individuals with ASD respond with low scores, but when asked how much discomfort they have, the score tends to be higher.
How does pain manifest in children with autism?
Children with ASD may not express pain in typical ways – crying, moaning, or withdrawing from a painful stimulus – and therefore may often be labeled as less sensitive to pain. Several case studies have shown that though children may not show these typical signs or may not react to pain in the moment, they still have physiologic reactions and behavioral reactions. Even with no obvious reaction to a painful stimulus, they may start breathing fast or their heart rate may increase. They may have increased stimming behaviors, aggression, or anxiety after the painful incident. Individuals with ASD also tend to show behavior changes for longer after the painful incident than neurotypical children or children with intellectual disabilities.
When assessing for pain in a nonverbal child with ASD, close attention should be paid to increased aggression, self-injurious behaviors, stimming, or any behavior that is not typical for that child. If they are acting unlike themselves, look for a possible source of discomfort or pain that may be present or was present in the near past. In a more verbal child, asking if they have pain or if something hurts may not accurately reflect what they are feeling. Using words such as “discomfort”, “uncomfortable”, or “anxiety” may better approximate the level of pain they are in.
What can I do about my child’s pain?
If a source of pain can be identified, treating that pain is of utmost importance. Treatment would be the same as for any other child—analgesics such as Tylenol or ibuprofen, ice, or heat (if tolerated), and rest. Parents and providers should be wary of hidden injuries that the patient may not be able to communicate about, such as a fracture or insect bite.
If the source of pain cannot be identified or you are unsure of the severity of the injury/illness, always err on the side of caution and have a physician assess your child. They should do a full skin exam to look for scratches, bites, rashes, or other injuries. If an injury is suspected to a limb, x-rays may be needed to rule out a fracture. If no clear injury or illness can be identified, parents and providers should look for other possible medical causes for the behavior changes, like abdominal pain, headache, or urinary tract infection.
For pain management during painful or stress-inducing medical procedures, like a blood draw, there are several techniques that can be used. Non-pharmacologic (medication) methods are preferred. Every child may respond differently to these techniques, so some trial and error may be necessary to determine the best method for your child.
• Distraction: If your child has a preferred activity, engaging them in this activity during the procedure may significantly reduce their focus on pain. This could include watching a show, blowing bubbles, deep breaths, playing with a toy, or calming movements such as a parent rocking them.
• Sensory distractions: There are several items that can be used to distract a child’s senses from the painful stimulus. A vibrating device or ice placed on the area of a blood draw or lumbar puncture can reduce the pain signal sent to the brain.
• Topical pain control: There are a few topical medications that can be used to reduce pain sensation. A cooling spray at the site of the procedure is quick and easy. A numbing gel or cream can also be applied 20-30 minutes prior to the procedure, which has been shown to be an effective way to manage pain during IV sticks. However, this has not been shown to reduce anxiety or fear during procedures.
• Deep pressure: Firm pressure, through squeezing or a tight hug, has been shown to significantly decrease anxiety and stress in individuals with autism. This method can also be used during medical procedures to decrease discomfort. Every child is different though, so deep pressure may be too much sensory stimulation for some.
Medications can also be used to control pain, as well as anxiety, during medical procedures. Pre-medication with acetaminophen or ibuprofen may be helpful in reducing pain. For extremely painful procedures, an opioid may also be reasonable, per a physician’s assessment. Anti-anxiety medications may be helpful in reducing not only anxiety but also pain as they are typically slightly sedating. If you feel it is right for your child, discuss these options with your physician.
When it comes to pain management in autism, remember these key points:
• Always rule out pain when atypical behaviors occur or when certain behaviors increase.
• Children are all different, whether in how their pain manifests or in what strategies work best to control their pain.
• There are lots of non-medication options to help manage pain and anxiety during medical procedures.