Archive for July, 2017

The Chronicity of Autism

Sunday, July 23rd, 2017

Be prepared. Knowledge that recovery from an autism diagnosis is possible should be accompanied by an awareness of the time and resources that must be invested.

The journey is characterized by periods of advancement, stagnation, and sometimes, regression. Success is more likely when professionals diagnose and treat medical issues, and traditional therapists ingrain proper development.

Depending on the degree of difficulty with oro-motor functioning, useful speech may take quite a while. Socialization is encouraged and more play with other children and leads to maturation. Some of autism’s related signs and symptoms, such as sensory issues, repetitive thoughts and behaviors, and gastro-intestinal issues may be at issue for years.

Secondary symptoms that may have been less obvious often come to the fore, such as ADHD, obsessive-compulsive behaviors, or anxiety. Medical specialists, such as psychiatrists, gastroenterologists, or endocrinologists are frequently sought to evaluate and treat co-morbid conditions.

The following is a sample of emails that have taken place over the past 6 months with a wonderful family, who are only able to manage yearly visits:

3/10/17 Cameron is on the following medicines…
His speech is great after ENHANSA and b 12 .
Just since last 3 days His focus has gone and is completely disoriented .
Has started repeating his play and is stuck to do the same thing all the time. Movement wise has become slow.
The therapist tells me could be sensory and compliance.
We had done flucanazole full of jan and Feb.
He is totally off sweets and ENHANSA is working great. Just don’t know y the focus has reduced…

3/17/17 Flucanazole again. Been just 25 days?
Wouldn’t it be bad for his liver?
And do I give it along with the ENHANSA or should I discontinue the ENHANSA?

3/22 Will stop the deplin, but I think it’s all after the ENHANSA. So it is yeast related.
He starts school on coming wed. Thus more stress!
ENHANSA has given him speech but now stressed about behaviour.

3/23/17 Cameron suddenly has stopped listening and has started zoning out.
So lethargic in his posture. Wants to lie down on the floor. Sometimes pushes his friends.
Will stopping the ENHANSA help? As it is definitely due to yeast. I don’t want his school to pick up his case in the first month itself.
Have stopped deplin today. Flucanazole is on.

3/23/17 I have got this letter from a well known pediatrician here…
The school has allowed us to send his meals from home. So no stress at that end.
We have already received the digestive enzymes and kept them handy.
The dr here is aware of Cameron’s diagnosis, but has not mentioned it to the school. We will take it as it comes.
Speech is fantastic with ENHANSA. Lot of spontaneous talking all the time. Clarity has come with L-carnosine. Deplin did help a lot with comprehension and there were no tics for 2 months.
Just can’t understand what happened a week after ENHANSA . Cold and a runny nose for a week ’til we started flucanazole…. Stopping ENHANSA hope the speech doesn’t reduce. Cause we won’t be able to start it again ’til vacations then…

3/25/17 Cameron had leakage of stool without even increasing the magnesium.
So I have not given him the extra dose. Today his behaviour was slightly better. Like 10% improvement.

3/28/17 Cameron has calmed down a bit after stopping the ENHANSA and deplin.
Currently he is on… Do let me know if any alterations to be made.
Also he has started repeating sentences and words. From movies. And robotic speech is slightly back.

3/29/17 First day of school.
Keep him in your prayers.

4/7/17 Cameron has calmed down and the tics r also not to be seen in the last 2-3 days.
Melt downs have stopped completely.
Worry :- repeating sentences, and not comprehending questions. Giving weird answers to any question. Focus not there… ENHANSA caused the flare according to me. So I feel we should not start it ’til… school breaks for 2 months. So all trials can happen during that time.
Do let me know about the b 12 shots too. As the speech has diminished by like 50%. He only answers when needed or forced to.

4/23/17 I feel the deplin had helped Cameron a great deal wen we had started it.
His comprehension of language and focus had increased a great deal. So will definitely re-start.
Main concerns :-  Spontaneous speech.  And comprehension of language. Focus.
Nalrexone I am applying religiously every night on his wrist.

4/25/17 Cameron stopped diflucan on 22 nd. And has been complaining of stomach ache.
Stool has been passing once a day .
Deplin is on.
Today the therapist felt that he was not focussing at all and was giving all weird answers. Which was not the case last week. Is all this regression always there after stopping the diflucan? Or is it just one off day.

4/26/17 New Laboratory Results

5/4/17 Cameron’s second round of diflucan is on.
And since yesterday he has started complaining of a stomach ache all the time.
He is passing stool twice a day and quiet loose .
Today he has barely eaten any food and is complaining immediately after 4-5 spoons of his dinner.

5/6/17 Cameron has been complaining on cramps in his stomach.
In a day 2-3 times and at night, too… fever, itching in the pelvic area and sore throath since yesterday nd now constipation.
I have started the fiber today. It’s extreamly hot here…
He’s not eating well since last 2 days and is very lethargic too. Didn’t go to school on Friday.
I have started activated charcoal.
Just worried that I hope this diflucan doesn’t effect him in the wrong way as he is not eating enough. This is something I had read so was thinking would be related to a die off.

6/4/17 Cameron breaks from school in a few days. 
Just yesterday and today I have noticed lack of focus and a few melt downs. Also severe stench in his poop and while passing gas. (for which I gave him activated charcoal today). We r scheduled in 2 weeks and blood tests follow.
Was wondering if I should start the diflucan now (hope it does not effect any Results in the blood test) or should we again give the ENHANSA a try?
Current meds and supplements: D3 2000, Fish oil, Probiotics, Gluthatoine, Deplin, L carnosine, MVIs, Magnesium, Vit c 500, Naltrexone cream…

7/10/17 Cameron has resumed school. Stomach is now fine.
Slight bloated though, but has lost his appetite completely. He is eating half of what he used to eat last to last week. Main issue is chewing. Takes an hour to eat an apple. Seems less energetic. Could be the heat here also but I feel he doesn’t have the strength. As is asking to be carried on steps and even out of bed wants to be carried. (carrying him has come almost after 1.5 yrs , after we met u first)
So I think it’s more related to energy. He seems v lethargic. Inspite of sleeping 10-12 hrs of good sleep. Do u think we need to start the b12 now?

7/11/17 I’ve stopped ENHANSA completely. It’s not for Cameron.
His behaviour is worsening.
I gave him 2 spoons of magnesium yesterday like advised last time by you.
I am out of town for 3 more days. Will go home and start diflucan 6 weeks again.

7/22/17 I started Cameron on 6 weeks of diflucan as he had started flapping and hitting everyone.
It’s been one week and he is much better.
We also started him on 2 capsules of vayarin. I can’t see any major change but it’s not harming in any way. So should we continue with that?

Discussion
Sometimes, such interactions are via phone and/or with our staff, but close attention to change, some patience, and accurate, appropriate interventions are often successful.

Specialists, therapists, and parents get used to what works, what doesn’t, and what hurts their individual child. Intelligent, warrior parents seek to leave no stone unturned. Eventually, the good times outweigh the challenging ones. And the challenging ones get less so.

For many families, the patient no longer meets criteria for ASD.

Conclusion
The most satisfaction comes as we appreciate the affected person’s strengths, and continue to work with those not-yet-acqired social skills.

All the work pays off. The children are loved, and love back. A way through the forest seems to appear. Life settles down, even for the most affected patients. Perhaps the parents’ greatest frustration is the understanding that intelligence is not the issue, and that there is a whole person inside.

Rerun: Autism Apraxia and the Oboe

Sunday, July 16th, 2017

Shortly after starting speech therapy, it is not uncommon for our parents to be informed by the professional that their child has speech apraxia. Here’s the thing, the child does not have autism AND an inability to produce words. In the vast majority of cases, it’s part of that child’s presentation of autism, not a separate diagnosis.

This story is my analogy for how this mysterious condition can be best understood:

I can’t play the oboe. I probably never will. But, if I wanted to, it would probably take, like, 6 months just to be able to produce a single note. Then, maybe after 1 year – if I practiced every day – I might be able to play Three Blind Mice. Poorly.

My brain did not come preprogrammed with instructions about the correct embouchure to play a double-reed instrument (or any wind instrument, for that matter). So, I would have to practice that movement of my lips. My lungs were never used to delivering short blasts to fine-tune output. I would have to practice that, also. Then, I would have to figure out some way to combine a number of physical feats at the same time in order to deliver that first squeak.

It wouldn’t matter how many times my teacher told me to play a song. It wouldn’t matter if she raised her voice and implored me to do a better job. Perhaps a different teacher would get me more motivated? I might get frustrated with my lack of ability and stop trying for a while. I could start making horrible sounds just to make something come out, and then the teacher would say that I’m not trying or I’m doing it wrong. Instructors would become very disappointed if I started to bang on surfaces with the oboe – just to make any sound come out.

That is exactly how it must feel for children with ASD who cannot speak. When a neuro-typical infant starts to babble and imitate words, it is because they already have human speech hard-wired into their cerebral cortex. Toddlers don’t think about, or really even practice speaking. It just comes.

Think how much more work it takes for a young child to let the caretaker know that they want juice, if they cannot speak. Infants simply cry and the parent offers a variety of choices until they hit on the correct one. Later, certain cries indicate a desire for food, not a toy. Without speech, a toddler pulls the adult to the refrigerator or opens it himself in order to communicate his wishes.

The child is not simply being lazy. It would be much easier to do it the way the typically-developing sibling does… “JUICE” or “Juice, please” or “Mommy, I want juice!” The parent who says “I know he can speak ’cause he does it when he wants to,” is missing the point. That is what makes the child normal – we all do what we can when we want to, to the extent that our abilities allow. The ASD child speaks when he absolutely must, and then only when every circuit is working correctly.

Likewise, for language to increase, pathways need to be laid down so that the activity can take place as part of a much more complex social environment and therefore more often and (hopefully) appropriately. Then, the electricity has to flow so that the circuit is completed and results in the correct sequence of events. It takes practice, desire, and an ideal set of circumstances. Many times, parents report that their child said some complex combination of words and ask, “Where did he/she learn that?” Well, they are apraxic, not deaf.

By getting a patient in the best physical condition, the routes can be laid down. By supplying enough cellular energy, the circuits fire. By supplying S&L, OT and ABA, the child gets to practice. Parent’s love and encouragement supplies the desire to try. That takes a great deal of work by all parties involved.

I will never play the oboe, but, thankfully, the majority of ASD patients eventually speak (in practice, the number is even higher because of the younger age of diagnosis and appropriate interventions). Of course, that is just one part of their complex story. The goal is not to play solo, but to be part of a symphony.

Screen Addiction Disorder?

Sunday, July 9th, 2017

Health professionals have coined a number of new-century terms in order to describe signs and symptoms that were previously unspecified. These have included, Sensory processing, Visual processing, Auditory processing, Executive functioning, Social anxiety, Oppositional Defiance, and Attention deficit – Hyperactivity disorders.

How About Screen Addiction Disorder?
It’s SAD.

Everyone, it seems, is glued to their gadget. We seek instant gratification about the latest Facebook post, email updates while at dinner, or even read and write texts while driving. These, and many more self-absorbed behaviors are magnified in autism.

The Child Development Center has treated a stream of youngsters who come in, balancing as many as 3 screens at the same time, in order to maintain self-control. In patients with ASD, repetitive behaviors and restricted interests are part of the fabric of their developmental disabilities. Why provide them with a tool that preys on their most serious weaknesses?

The two most common answers are 1) “It makes them happy,” and 2) “They are incredible with technology.”
1)  Kids don’t know what’s good for them, and 2) The software is great with the user, not the other way ’round. Even the youngest toddler can navigate a You Tube video or play Angry Birds.

Discussion 
Two recent NY Times op-ed stories got this discourse started. They were, First, Relax and Let Your Kids Indulge in TV, and Why Some Men Don’t Work: Video Games Have Gotten Really Good. Surely there is irony in these two stories appearing the same day?

The former opinion was written by an Australian mental health doctor and mother, who waxed nostalgic about the ‘good old days’, sitting around the TV with the fam. She wrote, “I find myself passing on to my children the addiction, at a time when this topic has become a focus of parental guilt and judgment.”

Wrong century, wrong technology.
“Family Ties” ≠ “Mortal Combat!” And, Phil Donahue ≠ Twitter.

The latter story was based on a publication in The National Bureau of Economic Research entitled, Leisure Luxuries and the Labor Supply of Young Men. The authors concluded that, “… innovations to gaming/recreational computing since 2004 explain on the order of half the increase in leisure for younger men, and predict a decline in market hours of 1.5 to 3.0 percent…”

The Times article quoted, “Adam Alter, a professor of marketing and psychology at New York University who studies digital addiction, highlighted the fact that, unlike TV shows or concerts, today’s video games don’t end.”

“Most forms of entertainment have some form of a stopping cue — signals that remind you that a certain act or episode is ending, like a commercial or a timer. Many video games don’t have them… They’re built to be endless or have long-range goals that we don’t like to abandon.” If this phenomenon is true for able-bodied young men, then this ought to be a cautionary tale for those who are even more susceptible.

I warned about this addiction previously. Repetitive viewing of videos and games does not promote imagination or socialization, which are core skills especially lacking in autism. Modern children spend little enough time outdoors, so a burning desire to get back to the iPad leaves athletic skills and exercise sorely neglected. Sound sleep suffers, as well.

Conclusion
If your child is neurotypical, the condition is problematic. The usual approaches to achieve balance can be successful (as long as the family isn’t experiencing the same syndrome). The author of the ‘TV is good’ piece claims to have found that ability to get her kids on nature walks and back home to watch informative documentaries.

Parents of children with ASD know this digital dilemma well. Reasoning, bribery, even physical punishment is fruitless. It takes hours of ABA to extinguish this seemingly obsessive-compulsive behavior.

This advice is offered to alert new parents, who may simply wish to entertain, or offer an early academic background. If the concern is that your child may suffer a ‘digital gap’, there will plenty of new iStuff coming out all of the time. It’s best to wait until there is a level of discipline and restraint.

We see evidence of Screen Addiction Disorder in all kinds of individuals, but it’s worse in patients with autism. It’s SAD. Treatment is difficult, prevention is the best strategy.

Categories Archives Links Contact Us

Brian D. Udell MD
6974 Griffin Road
Davie
FL 33314
Office phone – 954-873-8413
Fax – 954-792-2424

Email bdumd@childdev.org
Copyright © TheAutismDoctor.com 2010, 2011, 2012, 2013, 2014, 2015
All Rights Reserved