In a previous post, I told a story about a 4 year-old child who was misunderstood, misdiagnosed and mistreated by the conventional medical community. When I read the blog to my beautiful and patient wife, she asked, “Well, why don’t you write and tell the parents what they should do when their child is not acting right? Saying that we need to change the whole medical system is not going to help those kids!”
OK, so here is my advice about how to handle an ASD affected child when you, the parent, know that something is not right, but you don’t know exactly what is going wrong.
First – and I can’t emphasize this point enough – is that your affected children need to be taught how to handle a physical examination.
Parents know that ASD kids are:
- …very sensory and so they don’t generally like to be approached by strangers.
- …wary because of previous (sometimes frequent) attacks by physicians, nurses, phlebotomists, and other professional personnel.
- …visiting the clinic because something is wrong and so they won’t exactly be on their best behavior, anyway.
- …not suffering alone. The WHOLE FAMILY is not feeling great either by the time of this doctor visit, leaving raw nerves and testing patience to the max. So, a flailing, screaming, plus-or-minus-25-pound well-muscled child needs to behave ON THEIR OWN VOLITION (or so they think). That’s where behavioral therapy comes in.
This is a tall order, but, it may have a profound effect on the care that your child receives and the ultimate outcome of the professional examination. For the auto-immune tot, the ability to tolerate a physical examination is just as important as color matching.
The ER doc will not negotiate,
so the disruptive child will surely receive a ticket to antibiotic-ville, or worse*.
What the parent should do (regarding a sick child encounter):
- Practicing with social stories would be great, although it appears that there are few actual products out there. Inventing your own shouldn’t be too difficult, however, considering how ‘fun’ the last professional visit wasn’t. Practicing with doctor’s tools (actual and pretend) can really help.
- A “sensory diet” should be part of every ‘sensory’ child’s routine. I believe this is the key to why the ‘sensory therapies’ are more often successful than not. Try a warm (or cold, or epson salts, or etc.) bath, especially if it helps calm your child, prior to the visit.
- Unless you have been told the opposite, give an appropriate dose of children’s ibuprofen (not more frequently than every 6 hours unless you are consulting with your physician). In a relatively non-verbal patient, if pain reduction results in symptomatic improvement, that is a great clinical clue for the doctor to search for areas of inflammation.
- Don’t worry about food, and encourage fluid intake (water is best).
- Bring a list of all of the child’s meds and supplements. Since you probably won’t think of making one when you need it, it’s probably a good idea to ALWAYS have such a list on hand (for babysitters, relatives, therapists, others).
- When speaking with clinic staff, leave out the stuff about ‘the diet’ as it just aggravates traditional medical personnel and wastes time that they should be utilizing examining your child. Once you start talking about the GF/CF diet to conventional professionals, you just see their eyes glaze over and their eyes roll back in their heads and the professionals’ focus changes from the child to the caregiver.
- Keep reminding the physician that your child is autistic. Don’t bother trying to explain ‘Asperger’s syndrome’ or ‘PDD-NOS’ (wasted time again).
- Make sure that all of the child’s vital signs are taken and recorded.
- Every child deserves a thorough physical examination. As noted in my previous post, disruptive behavior in an autistic child could be a sign of acute disease, not a license to prescribe anti-anxiety medications.
- Make sure that all your questions are answered to your satisfaction. You are not bothering the doctor with “one more question.” If it feels that you are being treated that way, just plow on through.
- Have an opportunity to get a copy of the encounter.
- Try NOT to make it a middle-of-the-night ER visit, if possible. This could be a bad time for docs, staff, ERs and (especially) patients. I have a wonderful practice and patient calls on off-hours are usually warranted.