Getting high-quality medical care for your autistic child

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Every person faces medical challenges at one point or another in their life. Autistic people are no exception. In fact, for a variety of reasons, people with autism often face more medical challenges than others.

Content:
Why is it often difficult for people with autism to obtain high-quality medical care?
What do people with autism need in a medical environment?
How can parents help prepare their child for a medical event
How parents can help prepare the medical staff to work with their autistic child
How to choose a suitable doctor for autism
Every person faces medical challenges at one point or another in their life. Autistic people are no exception. In fact, for a variety of reasons, people with autism often face more medical challenges than others. Some of the problems that appear to children and adults on the spectrum include:
Digestive problems (it’s more common in people with autism)
Injuries (people with autism often lack age-appropriate coordination and may harm themselves as well)
Sleep problems (many autistic people have trouble sleeping)
Epilepsy (seizures are more common in people with autism)
Unfortunately, it can be quite a challenge for people on the autism spectrum to get the medical treatment they need – even as they speak and interact. It is even more difficult for someone who is non-verbal, or their behaviors seem out of control or violent.

Fortunately, there are some specific steps parents and caregivers can take to make sure the medical care of loved ones with autism doesn’t require a fight!

Why is it often difficult for people with autism to obtain high-quality medical care?
For people with autism, a number of problems can get in the way of medical care, especially in emergency situations. Hawa Megarjal is an artist, writer, and mother of a nonverbal son with autism, as well as the author of the book Learning to Kiss “We know there are communication issues, sensory issues, and anxiety issues – which are key points that must be conveyed and responded to in order to receive care as good as everyone else,” says Megargil. In other words, even verbal adults on the spectrum may:

They find it difficult or impossible to express themselves effectively in order to describe their medical needs
You find it difficult or impossible to understand and follow spoken instructions
Feel physically exhausted from the lights, smells, sounds, and noise of the hospital or emergency room
They have a different pain response than their normal counterparts (many autistic people have very high pain thresholds)
You need to beat, swing, tap or utter in order to calm down
Nonverbal and / or very anxious people on the autism spectrum also may exhibit behaviors that can seem quite intimidating to regular medical personnel with no knowledge of autism. For example, it may:

Bolt (run away)
Self-harm (biting themselves, banging their heads, etc.)
Be aggressive toward others
Say loudly, shout, or whine
Litter care
Because autistic behaviors can be extremely challenging in stressful situations, some medical professionals assume that they see someone in a mental health crisis rather than an autistic person under stress. As a result, they may ignore a medical problem and focus on a mental health problem that does not exist. “If someone develops autism and has behavioral issues, they assume it is a psychological pharma problem rather than asking if they should look for digestive issues,” Megargil says.

What do people with autism need in a medical environment?
Medical and hospital emergencies can be overwhelming for anyone. But for many autistic people, it can be horrific. For people with autism to be calm, receptive, connected and cooperative, they often need:

The hospital representative is familiar with autism
A place free from intense lights, glare and loud noises
Effective communication tools (keyboard, photo pad, etc.)
Information about what to expect (often in visual form)
Support from someone who knows and understands her (even when it is typical for the patient to be alone with the doctor)
Familiar self-soothing actions or items (possibly including freedom of movement, speech, use of a game or video, or other calming things)
How can parents help prepare their child for a medical event
If your child is going to have a pre-planned medical experience – a procedure, examination, or surgery – you have the opportunity to teach your child what to expect, how to act, and how to communicate with hospital staff. In fact, it can be helpful to spend some time preparing your baby even if you have just turned to the pediatrician for a baby health checkup.

Here are some of the techniques that Eve Megargel recommends:

Teach your child to understand countdown or visible numbers (time passing). This will help your child comply with the demands of “holding your breath for ten seconds” or “waiting for five minutes”, and will also help when anticipating an event such as a vaccination.
Teach your child to understand when the lockdown will happen (this is long; this is a few times). This will help your child to keep calm while understanding that the procedure will end at a specific, predictable time.
Teach your child to take deep breaths, meditate, etc. for relaxation.

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