Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

6/8/08

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.

18 comments:

Club 166 said...

S.L.,

Great questions all!

Jenny seems to very much pick and choose what she listens to from her child's doctors.

Joe

concerned heart said...

Someone has to publicize and study what happens to sperm with the fathers age. http://autism-prevention.blogspot.com/2008/06/background-link-between-older-age-of.html Average paternal age should be in the mid to late 20s. Autism and schizophrenia etc. rises in some non-familial cases with sperm DNA mutations caused by age and toxins.

Sarah said...

Thanks for this information. I'm very confused about why Jenny thinks epilepsy was a misdiagnosis. If someone is having seizures not otherwise accounted for, then aren't they epileptic by definition? This is puzzling. Autism is sometimes missed by doctors, but Jenny's refusal to accept the original diagnosis is incomprehensible to me. So much for a PhD from Google.

jypsy said...

"If someone is having seizures not otherwise accounted for, then aren't they epileptic by definition? "

Not sure about that... I have seizures and my dx is not "epilepsy" but "seizure disorder". Could just be semantics though....

Ettina said...

Epilepsy and seizure disorder mean the same thing. Seizure disorder is just a term some doctors use because they feel the term epilepsy is stigmatizing. But it's the same condition, just a different name.

Anonymous said...

Jenny does pick and chose just like every parent of children with autism....I have a dev delayed son (mulitple strokes) and am tired of everyone I meet whose child has autism telling me not to vaccinate my new baby. My mother HAD polio as a child. I see first hand what these diseases do to people. Ignorance is picking and choosing what one hears from doctors. It is well established that vaccines are safe and the benefits outweigh the risks. So please watch some videos on children dying with PREVENTABLE diseases. If my either of my sons catches something from your unvaccinated child it could kill them. Don't say well your children are vaccinated...what if my baby hasn't been fully vaccinated yet and your unvaccinated 10yr old spews germs all over my child. He will have to pay for your selfish decision. So until you all stop picking and chosing what medical advice to listen to leave Jenny alone. Her son can have both epilepsy and Autism who is it for you to judge?

jypsy said...

When Jenny quits advising parents not to vaccinate their children I'm sure we'll cut her a break, until then, I'm sure you'll agree - she's harmful to society. By the sounds of your post she's already given autism parents a bad name as people who don't vaccinate their kids. Please know, *many* of us FULLY vaccinate our kids.

Anonymous said...

Yes I agree. She is harmful but I do think it is shock and denial that pushes her in the direction she is going. It is sooo much easier to blame something for our children's issues rather than accept them. A lot of people see acceptance as a form of giving up. If they accept then they can't 'cure'. My son has issues similar to autism but not (he had strokes as I mentioned above). He could easily be classified as autistic but isn;t because although he shares most of the traits he isn't technically autistic he is a stroke survivor. I think when a family is hit with devastating news it is easy to go into denial and search for what will make the child "normal". My point is that I think Jenny is not at that stage yet and what makes her "dangerous" is she has the means to go public making it too easy to spread misinformation. Vaccines are an easy way out imo. Easier to think that they hurt the child rather than that is just how the child is because the latter has no cure. Either way acceptance that there is no cure, does not mean you don't try everything you can to bring your child to their potential. I have to say despite her "good intentions". Jenny does love and does everything for her son. I think she jumped on "the cause' prematurely.

jypsy said...

Acceptance is *not* "giving up" or "doing nothing" - far from it. Autism is seen as "devastating news" in great part because that's what they're told by people like Jenny. We are not in disagreement except that you seem to pin a lot of blame on "every parent of children with autism" (who don't vaccinate) - please know LOTS of us are far more sensible than Jenny & her friends and FULLY vaccinate our kids.

Anonymous said...

Yes you are right I did blanket statement which I should not have. I think society as a whole makes it devastating news since it is not fully accepted to mainstream. Everyone gives intergration great lipservice but in real life it doesn't happen especially if your child is on the moderate to severe end of their disability. Just go to a movie, bowling etc and if your child has a rough time or meltdown there are still comments and stares. Also forget about playdates as the child gets older. So instead of all this insanity about immunizations I think more effort should be put toward creating programs that truely intergrate kids with disabilities not trying to make them act more "typical" but allowing them to be who they are in a typical environment. I still have to cut Jenny some slack although I strongly disagree with the message she sends she is trying for change just misguided IMO.

jypsy said...

My autistic son, who easily fits into that "moderate to severe end" of autism, is 21 and we have been giving integration more than just lip service for at least 18 of those years. Have we changed society? no. Have we caused some change in some members of society? Absolutely. Why should we have to create programs in which to integrate our kids? Why not just integrate them into the ones that already exist? My son is a member of the PEI RoadRunners Club. He's a distance runner. He is fully accepted for who he is and as he is. Running is what interests him. Starting in grade 4 and until he graduated High School he was on the school track and cross-country teams. His social life revolves around races and training (and related social events like a special running buddy's surprise 50th birthday party a couple of weeks ago).
I think we agree on a lot, but not Ms. McCarthy. I think she's doing very, very serious harm to the autistic & autism communities and society as a whole. I'll cut her some slack when & if she ever comes to her senses. Spouting all that Indigo Mom Crystal Child stuff was one thing, spouting all this garbage about autism is quite another.

Anonymous said...

Jenny McCarthy's child never had autism. He is not autistic. But wait. Don't be too hard on her. She's a mom who had her heart broken by watching her son have severe seizures. She thought it was autism. Her doctors in the beginning jumped on board with the media frenzy. Turns out he was not and is not autistic, he has epilepsy. Jenny would be a beautiful spokeswoman for the epilepsy foundation.

generic cialis said...

My point is that I think Jenny is not at that stage yet and what makes her "dangerous" is she has the means to go public making it too easy to spread misinformation.

Büyü Yapmak said...

Thanks for this information. I'm very confused about why Jenny thinks epilepsy was a misdiagnosis. If someone is having seizures not otherwise accounted for, then aren't they epileptic by definition? This is puzzling. Autism is sometimes missed by doctors, but Jenny's refusal to accept the original diagnosis is incomprehensible to me. So much for a PhD from Google.

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Anonymous said...

Jenny is not saying don't vaccinate your children, she simply states to educate yourself to what vaccines your giving your children.so many more toxins are being added to some of the vaccines these days.

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Anonymous said...

It's sad that Jenny McCarthy is more concerned about selling books than telling the truth about her son not being autistic after all. I guess her publishers don't care either. They just want to keep the money rolling in. How tragic. McCarthy is not a true autism mom. Interestingly she does not come out and admit this as she has royalties rolling in for her books on autism. Love of Money really is the root of all evil.