Autism

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For the sake of simplicity, I’m combining ASD and ID mainly because their treatment and care have to consider more than their childhood.  When treating this population, focus on stability, and eventually truly consider long-term goals. The parents may say well the person is only a kid and that’s true but if something happens to the parents, how can we make sure the kid and the family’s wishes and plans are still being honored? Most kids grow into maturity and independence, but with autism or special needs that may not be the case. I don’t mean to sound brutal but I want to stress this point, people have intentionally harmed the child believing there were no other options. Therefore, you want to build the support and resources while considering the long-term plan of care.

Considerations for Treatment

1. It’s okay to be sensitive: with ASD and ID, there’s this general hypersensitivity to things that most people overlook like sound, textures, or whatever. It doesn’t take much for them to get anxious, excited, and at times appear irritable. The social cues can be difficult so you have to be patient, let them cool off, and help them feel safe… I have a patient who in the middle of speaking, he’ll just stares and start looking sad, and I’ll say it’s okay or take your time and he’ll usually regain his composure as if nothing has happened…I’m saying all this to say their response to medications can also act similarly. There may be some atypical side effects or an extreme opposite reaction as if the medications themselves are on a spectrum and I definitely would recommend doing genetic testing. I just love this population and they don’t always have the ability to express themselves or if something is going wrong. So for those who have communication issues, even if it takes up extra time, really pay attention to the nonverbal, sometimes I’ll ask them to write how they are feeling or what’s going on…. and I almost always suggest this group to contact me anytime if there are concerns.
2. Hash out the core symptoms vs. the extra behaviors: autism requires a lot of understanding, especially with many different variations. I actually searched for hours about why some kids are nonverbal and the general consensus is that it’s still not really clear (but check out the links below). I had one kid who wasn’t talking but became too talkative when I prescribe Vyvanse and the mother was joking about how it’s annoying the family. However, medications primarily treat meltdowns, other conditions, or difficult behaviors so it’s really important to let families know the purpose of treatment. For example, meds are not intended to make someone verbal. Nothing is FDA approved for the core traits of ASD but medication can and is usually prescribed to reduce problematic behaviors.
3. Check the nutrition: kids are already picky eaters but with special needs, I greatly emphasize nutrition to really assess how they are consuming the intake. Sometimes I have to think about something other than “a pill” like using a patch, liquids, ODT, and even certain colors, shapes, and sizes. There have been times that I had to completely change what I was prescribing oh and argue with insurance companies so make sure you keep assessing the food intake, recording height/lbs, and ask about bathroom habits. R/o if the kid is hiding food or not properly going to the bathroom, or losing weight. If the kid is too picky or small, I usually recommended protein drinks like Pediasure and seeing the PCP to make sure there aren’t deficiencies.
4. Keep it simple: sometimes I prescribe medications based on the family dynamics. I usually avoid 3x or 4x/day dosing or meds that require a lot of maintenance. For example, I have a kid doing well on lithium but has a very engaging family and then I have another family that’s somewhat homeless where I put the child on a different mood stabilizer that didn’t require blood draws…etc. Both families are doing well but overall I try to keep medication and treatment simple with kids and adults.
5. Focus on life skills: of course, it’s important to have good behavior, but with kids and in particular those with special needs, I try to let the parents know to keep focusing on life skills. Yes, school is important but the ability to either be independent or have long-term goals needs to be prioritized. I understand families that want to stop medications when things are good, want a better prognosis, or say what’s the next step now? so I usually tell the family that the purpose of treatment and follow-ups is to focus on stability, life skills, or a long-term plan. It’s just an honest and better way of saying how treatment will probably be for the rest of the person’s life.

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Helpful Links about Autism & Communication

With ASD and ID, education is lifelong, including for us providers. I wasn’t aware of some solid resources for children who are nonverbal. Some people assume it’s because they’re not smart or have brain issues, which is very far from the truth… Additional ASD help. I just assumed, why wouldn’t they be verbal or communicate? However, being naïve I didn’t realize it’s truly not that easy even with intensive therapy so I’ve spent some time exploring the topic and finding some helpful information:

• About Nonspeaking and Nonverbal: a firsthand account about a person with ASD who covers this issue.
• A Japanese author describes what it’s like to be a person with nonverbal autism…and published more than 20 books! – Time Magazine
• I Have Nonverbal Autism. Here’s What I Want You to Know: Here’s a nice firsthand account from a nonverbal person (and who still is) name Philip, who has his own blog: Faith Hope and Love Autism. His blog also has a list of bloggers about non-speakers and some articles about the subject. He started to communicate using the Rapid Prompting Method (RPM) that was developed by Soma Mukhopadhyay that helped her son Tito who is now a published writer and poet, in spite of his severe autism. Philip also has a list of other resources r/t RPM.
• The Art of Autism: a cool little interview from a non-speaking boy who wrote a bestseller book at the age of 9! don’t forget sometimes people with autism and mental disorders have superpowers and become prodigies.
• A story and some videos about a person who was once non-verbal and now write books for autistic children and I just love underdog stories like these –Scoop

Extra:

Warnings About Water 

I wanted to quickly add how ASD children are at a particularly high risk for drowning incidents. This mother’s son just ran into the pool and she also wasn’t aware of these occurrences. It’s an awesome story of how a man went to go save her son and thankfully the child recovered.  It’s also concerning that many residential areas don’t have any supervision. The mother explains:

…Anything could happen in a matter of minutes, and she has since learned autistic children are especially drawn to bodies of water. ‘A lot of autistic kids, love large bodies of water, pools, lakes, and like the ocean. I didn’t know until I was in the hospital, they let me know a lot of information about autistic kids,’ she said.

Public health data suggest that individuals with autism spectrum disorder (ASD) are at a disproportionate risk of water-related accidents, including drowning. The current study evaluated the effectiveness of a behavioral intervention package consisting of verbal instructions, modeling, physical guidance, feedback, and differential reinforcement to teach three distinct in-water safety skills to three boys with ASD. The targeted skills were (a) moving toward a fixed point of safety, (b) rolling from front to back, and (c) floating on the back and yelling for help. –NDPA