A Savage Side Note

I must add--as you may have read previously in my blog--I agree somewhat with Mr. Savage to the point of over-diagnosis. I've even contemplated if Jenny McCarthy's son possibly has other diagnoses, and not autism. I wonder if a lot of the so-called "recovered" children were never really autistic to begin with. I have seen allergies wrongly labeled as ADHD and behavioral problems. This does happen. There are also parents, a very small amount, who essentially "shop" around for an autism diagnosis. I would feel comfortable saying there probably are children out there labeled as autistic, who in fact are not. But, surely, no one would even ponder that 99% or anywhere near that number, of those said to have autism really don't (and furthermore, that they are brats).

I will also say that I feel we have become a society who wants only instant gratification, and that includes forcing pills down your child's throat so they behave more appropriately. To put a child on medications (especially say a 2 or 3 year old) first, without attempting therapy and other help, should be strongly discouraged. And, to medicate a child just so they are more docile, to prevent stimming (which is not self-injury), and so forth (and not because the child has severe issues, is harming themselves, severe mood swings, etc.) really should not be an option. All too often, autistic individuals are drugged to near-coma states, locked up, and forgotten about. This should not be tolerated.

I also feel for Mr. Savage, apparently his brother died in a NY mental hospital. That has to be awful, to go through that first-hand. I don't know much of his experience, other than a brief statement I found. But agreeing with Mr. Savage on his views regarding medications for children and sympathizing with him over his brother, does not excuse the ignorant and inappropriate statements he made.

Is Jenny Really An Autism Mom--and Why Should We Care?

Why am I concerned as to whether or not Jenny's son really is autistic? Why have I bothered to spend a few hours researching various conditions for these related posts? There are several reasons. First, I am not attacking Ms. McCarthy, I am simply trying to put some pieces together and ponder some possibilities (perhaps even offer insight). She herself has said several times now that her son no longer has autism, and that neurologists tell her he never had autism.

If this is the case, then we autism moms/dads and the entire autism community have to ask: Why she is still putting herself in the public eye as "THE" autism mom who represents each and every single one of us? It is one thing to be an actress or other celebrity and use your fame to bring attention to a cause (child abuse, drugs, medical conditions like cancer, etc.) and/or raise money for reputable charities. It is entirely different to do interviews, public appearances, be in magazines, and write books about autism, when or if your child doesn't actually have autism. This is a matter of ethics as well, since profits are being earned.

Most concerning is that her message is one of "recovery from autism," proclaiming that she "healed" her son. Why should parents pay attention at all, and even gain hope from, her son's supposed recovery in light of her now saying a. he no longer is diagnosed as having autism and b. doctors now say he never had autism? If you maintain that a certain treatment or diet "recovered" your child, there had better be zero doubt that this child has that which you claim to have recovered him from.

How can Jenny McCarthy claim to be an "autism mom" or to have "recovered" her autistic child, if there's any possibility her son never even had autism? Why should any of us, and anyone in the public, listen to her? I think these are legitimate questions, and ones we all have the right to ask.

Is Jenny Really An Autism Mom? (Part 3)

On Autism and Diagnosis:

A final point on whether or not Jenny's son truly did have autism is on how his diagnosis came to be. Apparently, he was diagnosed by the "best doctor" in town or some such. Even the best doctors can make misdiagnoses, and even mistakes. Part of this depends on the information he is receiving, either from the parents or from other physicians. The other part is the doctor's own experiences through his education, training, and with other patients. Evan may very well have appeared autistic in this physician's office. He was lining objects up and flapping. With such an observation, combined with a history of speech delay and seizures, it's not hard to see how the diagnosis of autism could be reached.

However, I feel it's important to note that this was a second opinion. Ms. McCarthy wasn't happy with the epilepsy diagnosis she had received from a previous doctor. It's possible that autism clicked with her (she herself says "this man is right," see below), an autism diagnosis made more sense to her perhaps. It was a diagnosis that tied up those loose ends she was concerned about (the stimming, the language loss, etc.). I know we felt a certain sigh of relief when given particular diagnoses for our daughter. It was a "oh, now I get it" reaction. There was information to be given, some resolution, and sometimes more resources. It may seem odd to people who don't have children with health or developmental issues, why a parent would feel an ounce of relief from a diagnosis. But, as a parent, we often see a new diagnosis as something that wraps our concerns up in a nice, neat package. It almost makes the issues we are facing easier to consume and easier to understand.

From Jenny's interview on Oprah:

Two days later, a doctor diagnosed Evan with epilepsy. "[The doctor said], 'There's got to be someone with seizures on your side of the family.' I said, 'No, actually I know every branch. I know what's going on. There's nothing. No one [with] epilepsy," she says. "And they discharged us." Jenny says every instinct she had was telling her that her son was not epileptic—so she went for a second opinion. After spending 20 minutes with Evan, a neurologist gave Jenny what she describes as a devastating diagnosis—Evan had autism. "And boy, my mommy instinct said, 'This man is right,'" she says.

I realize there are doctors so familiar with autism, they can apparently look at a child and give a fairly accurate diagnosis. That being said, do you want a "fairly accurate" diagnosis for your child, or a diagnosis based on hours of observation and information gathering? Our daughter had been followed by a neurologist for almost 3 years before we went for the official autism evaluation. She already had many diagnoses (apraxia, sensory processing disorder, developmental delay, static encephalopathy, and so on), and was receiving therapy for her needs. However, it was apparent her social and behavioral issues, combined with everything else, warranted an autism evaluation (to give us an answer, and to assist her in receiving proper school services, etc.).

With a rather hefty folder filled with records from our child's pediatrician, multiple specialists (including neurologist and geneticist), and her therapists, we headed into the psychologist's office. This psychologist was one of two "autism experts" in our area. She is one of those who can look at a child, and fairly accurately say autism or not. Still, she insisted on asking my husband and I questions, have us fill out surveys (together and separate, with her and at home), reviewing our child's extensive records, and interacting and attempting to play with my child. This was clearly a responsible thing to do. She was better able to educate us on autism (and specifically what that meant to our daughter), intervention and school recommendations, medications, and so on.

We went for 3 hour-long appointments, over the course of 3 weeks. And then, at the end of the month, we went back for our last appointment. We were handed a multiple page document, and the doctor reviewed her diagnosis (moderate autism, with a history indicative of moderate to severe autism). I have to say, I'd prefer to commit to 4 hours of testing and discussing to come to a diagnosis than 20 minutes of observing and asking questions.

Since a third opinion was never sought, it seems, we can't know what yet another physician would draw from Evan's case. Would the next doctor feel that his severe seizures had affected his language, and that perhaps he did have other neurological manifestations? We can't say for certain, but again, it could be a possibility.

*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Is Jenny Really An Autism Mom? (Part 2)

A Look At Auditory Processing, Allergies, and Autism:

Aside from, or in addition to, the possibility of epilepsy being the cause of developmental delays (and hence leading to a wrong diagnosis of autism) in Jenny's son, we can also look at auditory processing symptoms being similar to those of autism. In addition, a child suffering from food intolerances and/or allergies can have behavioral issues (or what looks like behavioral problems, from pain, discomfort, etc.). In recent interviews, Jenny has said her son continues to have some "auditory processing" issues.

More on Central Auditory Processing Disorder:

Early Signs & Symptoms:

* Difficulty following verbal directions.
* Echolalia (repeating back words and phrases without comprehension).
* Re-auditorization (repeating back what was heard, and then showing comprehension).
* A child who says "huh" or "what" and requires more repetitions of verbal input messages.
* Speech sound discrimination difficulties, especially in noise.
* Highly distractible/active.
* Unintelligible speech, but with adequate vocal inflection and gestures.
* Difficulty with memorizing names and places.
* Difficulty repeating words or numbers in sequence.
* May have speech or language "delays."

Nearly all of the CAPD symptoms can be seen in autistic children (specifically those with speech delays or language impairments), but again, there is more to the diagnostic criteria for autism than the symptoms listed for CAPD. Doctors really need to use caution when they throw out an "autism" diagnosis, especially when language and speech disorders can mirror symptoms of ASD's. I've seen this type of "warning" on speech apraxia websites, cautioning that there are some similarities with autism. So, is it possible that Jenny's son's proper diagnosis could be CAPD, with epilepsy?

With regard to allergies or food intolerances causing or worsening behavioral or psychiatric issues, we can look at this study (Untreated Celiac Disease and Development of Mental Disorders in Children and Adolescents):

The two adolescents described in these cases had suffered from episodes of major depression and other mental disorders before receiving a diagnosis of CD. The subject in case 2 had severe psychiatric symptoms years before adolescence. Soon after commencement of a gluten-free diet, coinciding with a decrease in circulating IgA antiendomysium and IgA antitransglutaminase antibodies, both youngsters considerably improved without any specific psychiatric treatment, and both remained in remission for at least 1.5 years of follow-up. Although the possible role of unrecognized psychosocial factors in explaining the remission cannot be excluded, it seems likely that in these cases major depression and severe behavioral problems, along with their improvement, were causally related to CD and its treatment with a gluten-free diet.

Since unrecognized CD may predispose the sufferer to serious mental disorders and behavioral problems, it should be taken into account in differential diagnosis in all age groups. The mechanisms involved in the etiology and pathogenesis of mental and behavioral disorders related to CD, and even to celiac-type gluten sensitivity, remain unresolved.

Certainly not direct proof of food intolerances (or in this case specifically Celiac Disease) can lead to or cause psychiatric disorders, but enough information to consider the possibility. So, again, if Jenny's son is a child with epilepsy (and associated delays) along with CAPD and/or food intolerances, all of that could add up to what looks like autism. It also would further explain this so-called "recovery" and why such improvement (apparently in speech and behavior) supposedly followed a switch to the GFCF diet (keep in mind, it may have been the epilepsy treatment helping the speech).

JUST MORE HYPOTHETICAL FOOD FOR THOUGHT...


*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Is Jenny Really An Autism Mom? (Part 1)

A Look At Epilepsy, Speech Delay, and Autism:

THIS IS ALL HYPOTHETICAL FOOD FOR THOUGHT. Jenny proclaims herself as the "Autism Mom" who speaks for all other "autism moms" and the "autism community." But, what if her son never really had autism? It's a fair question to ask, as Jenny herself has said in recent interviews: neurologists who see him now for epilepsy say he never had autism. What if, instead, he had a culmination of other disorders, that appeared similar to autism? Suppose a physician gave the "autism" diagnosis without really absorbing this child's medical history? Then what? Can anyone really consider Jenny an "autism mom" or as someone to "represent" anyone in the autism community? She has made quite a bit of money off of autism and out of promoting "recovery" for autistic children. Perhaps that is why she dismisses the neurologists who now tell her that her son was never autistic?

Okay, let's go back and review some medical history (as we know it, by Jenny).

We know that Jenny's son has epilepsy, he had at least 2 very serious seizures (to which I do absolutely sympathize with Jenny, I have seen my daughter turn blue, foam bubbling out of her mouth--those seizures are horrible to witness and scary as hell). Seizures, especially one that causes a child to go into cardiac arrest can cause neurological damage. Perhaps, that damage resulted in some "autistic-like" symptoms? It is very feasible that the epilepsy led to speech delays. Look at this study (that is very similar to the story of Jenny's son):

A 2-year-old boy presented with an early form of benign partial epilepsy with centro-temporal spikes (BCERS) and a severe speech delay. Family video analysis revealed an early regression of babbling and stagnation since the age of 12 months. Complete recovery occurred with anti-epileptic treatment. The deficit corresponded to a transient speech apraxia attributed to an epileptic disconnection of networks coordinating speech articulation. This observation is, to the best of our knowledge, the first demonstration that delayed emergence of language can be due to an epileptic dysfunction interfering with prelinguistic skills and therefore mimicking a developmental delay.

Bold for emphasis by me, specifically the regression, stagnation, and "recovery" following proper seizure treatment. Interesting when we know that Jenny's son is/was treated for seizures (have not been able to confirm whether he is still on a seizure treatment). Also important to note, not every seizure medication will work for every patient with seizures. It is often trial and error until the correct medication and dose is found. Some patients have to try several drugs before properly controlling, and therefore treating, their epilepsy.

Jenny's son had adverse reactions to at least one seizure medication, so who knows how long it took for the anti-epileptic treatment to begin working (and when his "recovery" began). It's also unclear if her son still takes seizure medication. On CNN, she did say that "seizures, we still worry about" Now any parent with a child who has seizures, especially those as severe as Evan's, understands that their child requires epilepsy medicine (typically for at least 1-4 years following the last seizure, depending on type of seizure(s) and patient's history). So, certainly, her son is still on medication--if she, and the neurologists, still worry about seizures (again, especially with a history of such severe episodes).

I've seen many statements about Evan being misdiagnosed with epilepsy. As if, the autism itself explained the seizures, and erased an epilepsy diagnosis. It is true that a percentage (around 30%) of autistic people have seizures, but seizures are not part of the criteria for autism. My daughter has a seizure disorder and autism, adding "autism" to her medical records did not make her seizures an unnecessary diagnosis. I wonder why it seems Jenny is quick to say that the epilepsy was a mis-diagnosis, but the autism was an accurate one?

Moving on, epilepsy occurring at the same time as speech delay in young children is not that rare. And, it's well accepted that young children with speech delays can present similarly to children with autism. There may be some red flags in those children. Physicians need to be very skilled in diagnosing autism, and also in pediatric epilepsy and speech delays, in order to help differentiate between the them (and understand what a combination of any of those might present as). There is a definite link between some types of epilepsy and developmental delays:

Certain types of epilepsy can be linked with learning, behavioural and speech and language difficulties. This is increasingly recognised and the risks are greater if epilepsy occurs before 2 years of age. Parkinson found that from a small study of children referred for assessment of their epilepsy, 40% had undiagnosed language impairment of varying degrees of severity.

Epilepsy can cause temporary loss of function in one or more parts of the brain. If these parts are involved with understanding, organisation and communication processing difficulties in using language can result. These difficulties can be severe, causing general delay in language development or a disordered pattern of language abilities.

The following epilepsy syndromes have associated language difficulties. They include:

• Landau Kleffner Syndrome
• ESES or Tassinari's Syndrome - now called CSWS (Continuous Spike Waves of Slow Sleep)
• Lennox-Gastaut Syndrome
• Temporal Lobe Epilepsy

Sometimes the disability can be extremely subtle - such as high level language impairment disorder. They may have pragmatic difficulties and, therefore, will not have a clear understanding of language use. They can appear socially inept and can misread others' intentions. In these cases the child may exhibit bizarre or socially unacceptable behaviours or the child's language may appear to be 'odd' in an inconsistent way. They may have poor turn taking skills, excessive or restricted topic maintenance, and poor skills in greeting, questioning, seeking the attention of others, describing or commenting.

Some children may have episodes of slurred or disfluent speech. These episodes can occur suddenly and be unconnected with stress or other obvious 'trigger' factors. They can be caused by changes in medication and/or as a result of epileptogenic activity i.e. electrical activity in the brain which does not necessarily manifest itself as an obvious epileptic attack.

It appears there's more than just a little evidence out there to suggest a child with epilepsy can also have developmental delays (specifically in areas of speech). It's clear that children with developmental delays can sometimes have "autistic-like" symptoms, and can also have sensory integration issues (which can lead to stimming and restrictive or repetitive movements, play, etc.). I would dare to say that there are more than a few children out there who were at one point diagnosed with autism, when in fact, they had epilepsy along with developmental delays.

Lastly, Dr. Fernando Miranda pushes for more EEG's and MRI's to be a part of the autism diagnosis process. He has apparently found children at one time diagnosed with autism to have various epilepsy disorders (and more than likely, not autism). I for one am thankful that my daughter has had an MRI and several EEG's, the information gained can sometimes be invaluable--both to rule out or rule in various conditions.


*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.