Here for a loved one

[amommy]

Hello, I am here to learn more and get advice on ASD.

A 4 y/o family member (J) was diagnosed with ASD last year (3) and when I was told this I was a little confused.

I was sure the got it wrong. I lived in another state and did not see her (J) but 1 or 2 times a year, so maybe I do see changes in her behavior differently.

from birth to age 2 she was like any other child. She laughed, played with other children, walked at average age, was repeating words and saying mom/dad and yes no and love you and was delightful baby.

Then J had an accident, she fell and hit head - hard.

After hearing about it, It wasn't something we were majorly worried about, when we were younger J's father had a similar fall at the same age and a scar between eyebrows to prove it. My sister had the same thing happen as well at age 3.

Kids fall, hit their head, and if it's not a very serious injury (skull cracked) get stitches, are gloomy, mopey & grumpy for a few days and back to normal - right

at least that's what I thought.

According to the mom (dad was out of town} J fell, hit her head on edge of a table and started screaming & bleeding bad. She was alert and herself. Mom took her to the ER and they proceeded to stitch her forehead. The way the mom explained the events is still disturbing after 2 years. They held J down and started stitching and the screaming got louder and louder and she said J turned red and purple and started breathing in short fast breaths while still screaming. She said they gave J something to numb it but she doesn't believe it worked or was enough or maybe they didn't wait long enough - idk. They did do an xray on J's skull and found no problems.
Not too long after I went to visit them. This was not the same child at all. The fun loving toddler that ran to give hugs and laughed and played was not this child anymore. She wasn't immobile or anything, still walked and moved but it was all emotionless. Example. They had ball pit balls on the floor in her room and she spent HOURS not really kicking more nudging the ball, focus on one ball, in circles and it was almost robotic, no emotion at all, unless we take the ball away or moving it somewhere else, then the loud AH-AH-AH cries, till she gets back into the same kicking a small ball in a circle, round and round. It was very sad to watch. And then there were the eyes. It was honestly like J was braindead, that look of nothingness there. No reaction when you say name, just a cold stare into nowhere. They were young parents had no idea what to do and everyone around them said J would snap out of it.

J is now 4 1/2 and though she has become much better, still does not talk, and has had problems since. J was diagnosed with different things
First they thought she couldn't hear b/c wasn't responding like used to and touching ear - they put ear tubes in at 3 - still touches ears a lot but better
They thought J might have eyesight issues but then tested good.
Speech issues - went to speech therapy still not talking but learned how to sign a few things like please and thank you - which are things she was saying at under 2 y/o
Then this past year mild autism.
But does autism happen, can it be caused, can a normal 2 year old regress so fast after an accident and become autistic??
From what I have read autism doesn't happen, you're either born with it or not. Is that true?
If J is not autistic then what could it be? Traumatic Brain Injury, PTSD, tumor - IDK I am at a loss. and it has taken its toll on her parents. It has majorly affected their relationship.
I have been trying to get J's parents to get his brain scanned for over a year, and finally after a therapist recommended it they will ask dr to get one, and hopefully they can schedule it soon.
J is smart, understands some things but gets frustrated when she doesn't understand what we are trying to tell her (almost like cannot hear words right) for example if I say get me your cup so I can fill it up, if I point directly to it she will get it and smile, but sometime will hand me whatever is in her hand at the time (and get upset b/c I took from her) if I say no your cup and point towards it, then she gets it. She is still in diapers, well pullups, trying to potty train, doing good, goes to bathroom sits, but cannot get her to ask to go. but she will take our hand and show us what she wants sometimes, like go outside, or to her moms room. She picks things up when we tell she made a mess and needs to pick up her toys. she hums baby shark and barney. I recently moved close by and when I take her to the bathroom and wash her hands I sing the baby shark tune (wash our hands do do do...) and just today she started humming it when I was washing her hands.

Anyway, this is a long introduction and probably need to post in another thread. We are obviously new to this and at a loss.

 

[Outdated]

It's difficult to say without knowing the child well, and all of us are so different from each other as well.

They held J down and started stitching and the screaming got louder and louder and she said J turned red and purple and started breathing in short fast breaths while still screaming.

If this was me as a child getting stitches wouldn't be so bad, but being held down like that.....
(they use superglue for head wounds on children here now, less traumatic and no stitches to be removed)

And then there were the eyes. It was honestly like J was braindead, that look of nothingness there. No reaction when you say name, just a cold stare into nowhere.

This is very typical autistic behaviour, almost a stereotype. I do the same myself a lot. Some people call it the thousand mile stare but what's really going on is I'm off in a daydream. When I'm lost like that I often don't hear voices, not til people are angry with me anyway.

 

[Crossbreed]

I am no psychiatrist, but your description sounds like a TBI. Does she have any siblings with autistic traits? If it is in her family, a TBI could take away her ability to mask.

IIRC, TBIs will not give a false positive on an autism screening test.

From what I have read autism doesn't happen, you're either born with it or not. Is that true?

People can be born with a mild form of it [ASD1], but our sensitivity makes us more vulnerable to certain postnatal encephalopathies [permanent, allergy-like TBIs].
https://autlanders.blogspot.com/2019/07/autism-subtypes.htmlhttps://autlanders.blogspot.com/2019/07/finding-support-resources-in-usa.html

 

[Nitro]

Little known to many here I'm sure, I am in fact a TBI survivor.
That gives me a little bit of firsthand knowledge about that subject based on personal experience.
I want to also state that I have no medical or psychiatric qualifications, so take from what I post as just a jumping off point to seek other opinions from those that have them.

From my own studies on autism, I would tend to agree with @Crossbreed about his statement on the TBI issue.
He has his own experience as a level 1 autist and with two of his own children that are a level 2 and a 3 if that helps give him creedance on that side of the fence.

I accidently discovered that I was on the spectrum during my cognitive rehabilitation sessions I was receiving after my injury.

As we delved into my past, it was determined that I was always autistic, from square one at birth, not from the injury itself..
Under the DSM IV standards, I would have been disqualified on an Asperger's Syndrome assessment due to an early speech delay, so I still fly the high functioning autie flag and have never flown the Asperger's one.

There is a fairly strong chance that a sibling of mine is on the spectrum as well as my Father, but it should also be noted that I was the only one out of the three of us that got the injury.
I do have three other siblings that are not on the spectrum.

What I would recommend is that the child be taken to a neurologist that specializes in brain injury and go from there.

 

[Rodafina]

I am no psychiatrist, but your description sounds like a TBI

What I would recommend is that the child be taken to a neurologist that specializes in brain injury and go from there.

I agree with Crossbreed and Nitro, and value their experience here. Such a marked change does give rise to many questions.

One thing to consider, which is more difficult to ascertain from your post, is if this child could have been or be experiencing any sort of abuse or neglect. Children respond to trauma in unique ways that can be difficult to understand.

The fact that there was an acute change in J’s personality is concerning.

 

[Neonatal RRT]

It is sometimes difficult to discern "causation" and "association". Did J have an underlying autism? Difficult to say. Can a traumatic brain injury effect similar areas of the brain commonly associated with autism? Absolutely. In which case, one could theoretically have some "autism-like" symptomatology,...without having the actual anatomy and physiology of an autistic brain, which is quite complex and goes well beyond that of what might be seen in a traumatic brain injury. Cerebral infarcts due to hemorrhage are not uncommon, relatively speaking,...I work at a children's hospital. Furthermore, damage done has an early phase and a late phase (weeks later) and will have hallmark characteristics on MRIs,...emphasizing the importance of follow-up exams and imaging. Just because a cranial X-ray did not show damage is meaningless when it comes to the brain.

Autism is a prenatal, genetic, medical condition. It is not a postnatal condition. You can't "cause" someone to have autism after they are born,...that we do know. What we don't know,...and a topic for another discussion,...is what is causing the rather sharp rise in prenatal, genetic expressions of autism within the human genome. We have some ideas and associations,...but no "smoking gun",...suggesting it may be multi-factoral.

What you describe in terms of the "regression" at the age of 2-3 is not uncommon with some autism variants. Normally,...what should happen with ALL of us is a process called "synaptic pruning" between the ages of 18 months and 3 years. What neuronal connections are "weak" or "unused" or "redundant" go through a normal process of programmed cell death, called apoptosis. However, in some variants of autism, not all,...the normal gene expression for this "synaptic pruning" does not occur, the brain continues to grow, abnormal pathways that should have been "clipped" remain, the neurons in the brain get "too crowded" within the cranium, and it results in abnormal function in certain areas of the brain,...and the end result is varying degrees of "regression",...the areas involved in speech are often affected, amongst others. Having said all of that, I go back to my first statement,...causation vs. association,...just because the timeline coincides with what some autism variants experience, does not mean autism in J, per se. This obviously needs a more, in depth, assessment.

Brain scans vary in their views, resolutions, and interpretations. If a general radiologist views a CT or MRI, they might not recognize the hallmarks of an autistic brain, but may be well-versed in damage due to trauma, cerebral infarcts (strokes), etc. Unless you are at a university-based medical center with an autism research center, you might not have the specialized radiologists that could discriminate the finer details.

 

[Lysholm]

IMO it's irresponsible to diagnose this kid as autistic with all of the other issues. It doesn't seem possible to isolate the autistic behaviors for a definitive diagnosis.

I'm not a fan of saying it was a TBI because kids hit their heads all the time - there must have been extreme circumstances for a kid to hurt themself that badly. However, some symptoms do align with a TBI. Diagnosing a TBI is tricky business, as they aren't taken seriously outside of sports medicine (ex: football injuries). An MRI needs to be done within seventy-two hours or localized swelling will be gone and little, if any, signs will remain visible. While a brain scan is a good idea, they may not find anything at this point, so no one should get their hopes up. And, BTW, an MRI is where they put your body in a tube and it makes a ton of noise and you have to lie perfectly still for over a half-hour. IDK if the kid will tolerate this. A CT scan is less involved, less complete - but it would find something like a tumor and can guide further testing.

I know the parents want answers so they can move on with life and plan for the future, but this will take years to flesh out. They will need you to be encouraging and not judgemental, so being a good confidant will help the most IMO. And don't let the parents blame themselves for anything. People trust medical professionals to do the best/all they can while those affected are busy coping with the situation. The kid's behavior in the ER should have immediately triggered mandatory investigation into the child's neurological state, especially because of the head impact.

 

[Aspychata]

Also injuries to the front of the head have been known to change the personality. This is from a friend who is a MD. Motorcycle accidents, etc, can completely change the person you once knew. I fell down busted my forehead open, l do feel different but it could just be me trying to fill in gaps also.

 

[Crossbreed]

Can a traumatic brain injury effect similar areas of the brain commonly associated with autism? Absolutely. In which case, one could theoretically have some "autism-like" symptomatology,...without having the actual anatomy and physiology of an autistic brain, which is quite complex and goes well beyond that of what might be seen in a traumatic brain injury.

So, can a TBI give a false positive on an autism screening test?

 

[Neonatal RRT]

So, can a TBI give a false positive on an autism screening test?

Good question. I think it depends upon the specific test,...who is doing it,...and how they are doing it. That said, with a professional screening,...more specifically, a comprehensive screening,...cognitive performance, ADOS, interview, etc,...I am thinking less likely.

When I suggest "autism-like" symptomatology,...at least in my experience with children with TBI,...there may be a few observable deficits that are consistent with an ASD,...not the "whole package" as one might say. To the untrained eye, someone might suggest that "they have similar behaviors",...but to the trained eye, they are missing much of the criteria to suggest an ASD.