How far to go with medical care

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blukarma
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17 May 2023, 6:39 pm

I have a nonverbal son with autism. He is close to 15 years of age and as he is becoming an adult I've become concerned with his medical care. I am not talking about any therapy to "treat" autism but actual medical care.

He becomes very upset if he needs a blood draw. In fact, he recoils at almost all physical medical treatments: blood pressure, temperature, etc.

My question is do I try to get effective medical care with whatever examination he allows without undue stress? Currently, blood draws are process where he is restrained by multiple adults. These draws aren't for a routine issue, but for monitoring a medication he takes that treats inoperable plexiform neurofibromas. It's a mixed bag. As an observer the medication has improved his quality of life but the monitoring must feel like a form of institutionalized torture.

Sometimes I wish they could just hit him with some nitrous, draw the blood and let us be on the way with the only evidence to him that something happened, a bandaid.

I'm struggling with this and providers are usually out of the room and leave the mayhem to me and the techs.



timf
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18 May 2023, 6:16 am

I do not know to what extent he can participate in assessing his own situation. If he knows that he has difficulty in some situations, is he may be open to trying at some level to accommodate or manage a slight improvement through his own efforts.

When my daughter was small I asked her to hold a five pound weight outstretched and would count until it was too heavy for her to hold up. I then asked her to try again and put more effort into holding it longer. i was trying to teach her that she could achieve more through concentrated effort. This is a skill that, while perhaps not needed every day, can be useful in navigating some situations.

If your son can mange to see some success from his own efforts, he might be able to better summon internal resources to deal with unpleasant situations.

You might see if you can interest him in taking his own blood pressure at home. there can be ways to slowly develop skills by "creeping up" on them.



DW_a_mom
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20 May 2023, 1:24 am

Life with an ASD child who cannot fully communicate is always going to be a confusing balancing act. I think all the concerns you are feeling and have expressed are valid, as well as difficult to resolve. Even though my child was verbal, my brain still fills with regret remembering some of the times I look back and feel I balanced wrong. I will say that no one is in a better position to figure it out than you are, so listen to your instincts and trust yourself. Gather all the information best you can, gather voices and opinions, gather what you can from your child, then sit quietly with it all and let your instincts take over. Don't let anyone push you into a decision that goes against your instincts on what will be workable for your one unique child. Remember that answers don't have to be all or nothing, and that sometimes forging an entirely new and different path will be best. Allow yourself to be creative. Allow yourself to take time, until you get comfortable with a choice. It won't always be perfect, but its all you've got.

As an adult, btw, my son appreciates how hard I fought for him, and how hard I tried to hear then amplify his voice. Despite the mistakes. No parent gets away without mistakes.


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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


SocOfAutism
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22 May 2023, 12:30 pm

Can they give him something like Ativan or Xanax? Something for stress that he doesn't need to take daily but can take as needed before something very stressful? I'm sure they don't want to medicate him if they are testing his blood, but the heightened anxiety itself is going to throw off results.

My 9 year old is like this too when they draw his blood. It take several adults to hold him down already.

But I totally agree with DW. Use your instincts to figure out when to step up.