No, I'm not talking about a new Common Core problem (although I've been pre-warned this is coming...), I'm talking about division in the autism community.
I volunteer with an organization (have done for a few years now) and part of this involves moderating several groups for families with a child with autism. We have a rule - that providers are allowed to join some of the groups, but not allowed to advertise their business. The groups were started for families, by families, and we, as an organization want the support and recommendations to come from families. Why?
Well, imagine this. A family arrives in a new location and asks the question "Can anyone recommend an ABA provider?". They receive responses from multiple people, one saying that Company A has a great curriculum, immediately available tutors, a great center, another saying the same about another, Company B. They are both providers, working for the companies they have recommended. Then, you have a family member who comments that Company A has such high turnover with tutors that they have just left that provider. Now you know why Company A has available slots and needs a patient to fill that slot. For a child that maybe doesn't do well with transitions, such as a military child, that could be a major problem. Often, when there is high tutor turnover at a provider, it can be indicative of another problem. Maybe the training is inadequate. Maybe they pay lower rates than other local providers. Maybe there is a leadership problem and tutors are simply unhappy and leaving. None of this information would be told by a provider, so a family only gets the good points, not the bad. Not that we want people to simply moan about providers, but, we want families to get an honest impression and simply, when there is money involved, that doesn't happen. ABA providers are a business and are around to make money. ABA has boomed in the past few years and there are now so many providers and it is hard for families to tell which are good and which are the therapeutic equivalent of puppy mills. This is one way we try.
Anyway, during an occasional 'cleaning' of a group, I noticed a post that was basically a long business promo post, but disguised in a 'this is how we do ABA' informative framework. It was still clearly an advert, regardless of the probably useful other information it contained. It was deleted. Upon checking further down the page, there were numerous other business responses and promo posts, all of which also were deleted.
I had emailed the original person to remind them that providers weren't allowed to post adverts on the page, regardless of how they were worded. It was interesting how he responded, to the effect of "I saw others posting, so I thought I would too - it seemed only fair". Of course, I wondered if he would do the same if he saw someone stealing a car, but, anyway, the entitlement irked me. Then, he proceeded to chastise me for having deleted his post first, before the others (which I was working my way down through). This provider has been used to having a monopoly in his area and is clearly irritated that his former employees, that are now his competition, had discovered a resource to post in before him. Either way, all the promotional posts were deleted and reminders dished out.
He then posted an article that, for someone with my views on autism (and I should add the philosophy of our organization, to respect all treatment choices), ie, its biological basis, irritated me further. It was this post. It's written by John Elder Robison, a well known, extremely high functioning man with autism. Don't get me wrong, he's got more experience to comment on what he, as a person with autism needs than I, who simply has a child with autism. But (and you knew there was one coming), he is one man. Ever heard the phrase "when you've met one person with autism, you've met one person with autism"? Well, precisely. He's advocating for what he wants. He believes in neurological diversity, that is, that people with autism are different, and that's normal and we should just give resources to where they are needed for accommodation. But, here's the problem. Every single person needs something different. Some need lifelong extensive support and healthcare management. Some just need kind friends to help them through life, as well as early intervention and nutritional support. Some need a little more extensive intervention early in life and then manage with limited support as adults.
Let's look at this another way. In the same way that people say we cannot do differentiated education because of the different needs (although I would argue with this piece that it is rubbish that it was written from the perspective that we should do 'good enough' for the average/struggling learners and simply only concentrate on the gifted learners), Mr Robison's suggestion is totally unworkable too. There simply isn't the financial availability to give whatever technological marvel has been invented to every child that needs it. Neither as simple is the case of managing other conditions he mentioned such as seizures, anxiety, depression. Seizure disorders are very complex and often difficult to manage. Anxiety and depression are not just fixed with a pill. Some of the medications used to treat these conditions have side effects that actually make the problem worse and induce suicidal thoughts. Let's also consider that the brain of someone affected with autism is different and thus medications don't work in the same way. So, whilst this is a wonderful idea of simply 'managing' all these problems, it doesn't really get to the real problem.
We still don't understand what has caused the explosion in autism, particularly among boys. His strategy doesn't consider that the data is continually showing massive rises. It's interesting that also, from MIT (although Mr Robison is not affiliated with the university), another researcher within a month of this article, came out with this news piece. In it is the dire prediction that by 2025 half of children will be affected by autism. HALF. Do you think Mr Robison's wonderful suggestions will be an option? No. Not even close. They're not workable now.
We don't put anywhere near the amount of money into finding both a mechanism for autism (or autisms) and thus even opening up the possibility of a future cure as we do into other childhood diseases or conditions that affect a fraction as many children. It's about time we threw everything we had at it.
Bringing this back to the poster in question. He had posted the Robison piece with a comment to the effect of "Completely agree". Well, firstly, he would, as an ABA provider, because, let's be honest here, if you were a provider of ABA / autism therapies, and there was a mechanism to 'cure' autism, you'd be out of work. Your entire existence as a professional would be questioned.
I don't question that ABA can help provide children with meaningful progress in skill acquisition, but, does it 'cure' autism? No. It does not. The problem with being a touted local 'expert' on autism, especially in a forum where many of the families are new to the disorder, is that when you post an article like this, it becomes somehow gospel.
Society seems utterly oblivious to how the current levels of childhood autism are going to affect them and importantly, their taxes. They already complain about having to pay for things they don't use. Imagine when this comes along - when we have millions that are incapable of work, or even of semi-independent life, because, nothing could be further from Mr Robison's utopia of support than the current situation. Where health insurance companies are still not providing ABA therapy to children that need it. Those same health insurance companies also routinely refuse to pay for GI investigations or MRIs, or EEGs in children with unmanaged seizures. Where families seeking help and acceptance for their children find combative school districts and bullying, intolerant children and parents alike. The same children who will, like it or not, be paying extra taxes to support their classmates throughout adulthood.
The best hope we have is a mechanism and cure and prevention. That is exactly where our research dollars should go.
From a personal standpoint, I am utterly sick of the division in the autism community. Autism is not a quirky personality, or 'neurological diversity'. It's a disorder. It's even called a disorder.
ABA providers are often part of the problem. In their desperate need to convince everyone of the worth of what they do, they arrogantly dismiss every other therapy, including those so much more well-established, such as speech and language pathology and occupational therapy. They deny the existence of sensory problems. They dismiss the possibility of comorbid biological conditions that might affect behaviour. They are probably the most closed-minded therapists I've ever encountered. And with that blinkered view comes arrogance. Most other therapists co-treat. They want to all be on the same page. ABA however seems to jealously guard its domain whilst decrying everything else as unproven or quackery. The sad thing is, they take families with them in their crusade to prove that autism is a behavioural disorder. Families that might have been open to other possibilities.
It's time for everyone to get on the same page and realize the rightful place of everything in the treatment and understanding of autism, since, in the grand scheme of things, no-one has the answers.
Perhaps it's time we all sat down and actually worked together, where families are not hounded and ridiculed for wondering if their child might be reacting to foods they're eating, or if they do have a bacterial problem, or whether they might be having sensory problems. Where professionals see a child with specific needs that maybe they can help, or, if they can't, maybe another professional can.
Or, maybe, just maybe, the reason that child has their hands constantly down their trousers is not behavioural, it's itching from a yeast infection...
Thursday, January 22, 2015
Thursday, January 1, 2015
Annual Reflections
New Year for me is a time of reflection. It's a time to look back on what we did last year, of what we achieved, of what we tried and the things we never got to.
2014 for our family was a very busy one, but one that was answer-packed.
The two biggest pieces of knowledge we learned regarding our son came in the latter half of the year.
- Our son has a pretty significant Lyme infection.
- Our son has folate receptor antibodies.
For me, knowledge is power. You can treat the things you find, but only if you look for them. You need to target your search, it simply isn't sensible to test for every condition known to man (and it's also crazy), but, you do a little CSI work and let the evidence lead you.
Since very early in our autism journey, I have learned to let go of the label. Our son has a collection of symptoms that together meet the diagnostic criteria for a disorder they call 'autism'. The main problem I have always had with this diagnosis is that it is unscientific. It is simply looking at a person and observing their behaviour. It includes no testing, no bloodwork, no genetic profile. Over the years, the DSM has expanded too much. Normal human processes such as grief can now be classified as a psychiatric illness indicating a need for medication. I reject this notion.
For me, behaviour is founded in physiology. Biology dictates behaviour. If you can figure out the biology, sometimes, you can improve the behaviour. Think of something as simple as a menstruation cycle - a person's behaviour can change so enormously for just a few days a month.
I have always taken the approach of treating the biological problems first, and in turn, we've been rewarded with an improvement in the symptoms called autism.
Well, over the past 5 years, we've seen a huge improvement in almost every area - in social skills, in self-awareness, in independence, in cognition, in behaviour, but most importantly - in health. Our son is healthy.
So, back to the past year's knowledge acquisitions.
We treated the Lyme, after discussion with several doctors. We didn't notice any changes after testing. That is both good and bad. It was great that we saw no negatives. I've heard pretty bad tales of people starting antibiotics for Lyme and their system crashing. We didn't see that. We also didn't see any gastrointestinal problems. We added a ton of probiotics afterwards (and continue them) to ensure that we don't get a yeast problem emerging after essentially wiping out our son's gut flora. Here's what concerns me about seeing nothing. Did we get the Lyme? Did it have any effect at all? I guess we need to just trust that we did and now be super careful to watch for any other symptoms that could indicate a lingering problem. One of our son's problems that tipped us off was knee pain. I can say that we haven't heard any complaints of knee pain, and that is something we can continue to monitor. If we see signs in the future, we can always re-attack.
We also switched our son from simple folate supplements (5-MTHF) to a blended medicine called Cerefolin, which contains 5-MTHF, N-Acetyl Cysteine and the Methyl form of B12. It's a little bit of a dream pill, aside from the fact that I have to crush these monsters to get our son to take them in applesauce. Since increasing his dose of these, we have seem improvements in pragmatic language and social skills, which is interesting. More than this though is the comfort of the knowledge that this is not a shot in the dark, knowing that giving these supplements is warranted in quite a big way. We've been dosing some form of activated folate for a long time and increased it when we learned of the MTHFR genetic variations we both carry, We've always seen improvements with it. It's nice when the gains increase and continue.
I've heard so many things about autism over the years. As time has gone on, my belief in a biological basis has only been strengthened and I do not see this changing in the slightest.
With time though comes a disregard for how others' comments affect you. When we started this process, I felt self-conscious. I doubted. I wondered if we were indeed delusional, sad, unaccepting, unloving, desperate for a child other than our own. I took each attack on biomedically engaged parents personally and I would respond. Now, I don't. I know that the ultimate love for a child guides a mother who wants answers. I don't doubt our approach. Not for a second. The proof stands in front of me. A child who was diagnosed with moderate to severe classic autism just a few years ago played in a hockey tournament this past weekend. He scored 2 goals in his first game of 8 in total over the weekend. Not a 'special' league. A regular ice-hockey team. If I'm wrong, then I'm just the luckiest person on the planet. My son makes me so incredibly proud. He's funny, engaging, imaginative, expressive, loving and social. He's so much more than a label given by a lazy doctor 5 years ago.
If you are even thinking about a biomedical approach for your child, do it, please. Make it your resolution to try something new, because, at the end of the day, you will not move mountains with behavioural therapy, even if it is somewhat helpful, because, whilst biology can determine behaviour, behaviour cannot alter biology. Look at the cause, not the symptoms.
My wish this year is always for answers and progress. For our family and for yours.
Happy holidays!
2014 for our family was a very busy one, but one that was answer-packed.
The two biggest pieces of knowledge we learned regarding our son came in the latter half of the year.
- Our son has a pretty significant Lyme infection.
- Our son has folate receptor antibodies.
For me, knowledge is power. You can treat the things you find, but only if you look for them. You need to target your search, it simply isn't sensible to test for every condition known to man (and it's also crazy), but, you do a little CSI work and let the evidence lead you.
Since very early in our autism journey, I have learned to let go of the label. Our son has a collection of symptoms that together meet the diagnostic criteria for a disorder they call 'autism'. The main problem I have always had with this diagnosis is that it is unscientific. It is simply looking at a person and observing their behaviour. It includes no testing, no bloodwork, no genetic profile. Over the years, the DSM has expanded too much. Normal human processes such as grief can now be classified as a psychiatric illness indicating a need for medication. I reject this notion.
For me, behaviour is founded in physiology. Biology dictates behaviour. If you can figure out the biology, sometimes, you can improve the behaviour. Think of something as simple as a menstruation cycle - a person's behaviour can change so enormously for just a few days a month.
I have always taken the approach of treating the biological problems first, and in turn, we've been rewarded with an improvement in the symptoms called autism.
Well, over the past 5 years, we've seen a huge improvement in almost every area - in social skills, in self-awareness, in independence, in cognition, in behaviour, but most importantly - in health. Our son is healthy.
So, back to the past year's knowledge acquisitions.
We treated the Lyme, after discussion with several doctors. We didn't notice any changes after testing. That is both good and bad. It was great that we saw no negatives. I've heard pretty bad tales of people starting antibiotics for Lyme and their system crashing. We didn't see that. We also didn't see any gastrointestinal problems. We added a ton of probiotics afterwards (and continue them) to ensure that we don't get a yeast problem emerging after essentially wiping out our son's gut flora. Here's what concerns me about seeing nothing. Did we get the Lyme? Did it have any effect at all? I guess we need to just trust that we did and now be super careful to watch for any other symptoms that could indicate a lingering problem. One of our son's problems that tipped us off was knee pain. I can say that we haven't heard any complaints of knee pain, and that is something we can continue to monitor. If we see signs in the future, we can always re-attack.
We also switched our son from simple folate supplements (5-MTHF) to a blended medicine called Cerefolin, which contains 5-MTHF, N-Acetyl Cysteine and the Methyl form of B12. It's a little bit of a dream pill, aside from the fact that I have to crush these monsters to get our son to take them in applesauce. Since increasing his dose of these, we have seem improvements in pragmatic language and social skills, which is interesting. More than this though is the comfort of the knowledge that this is not a shot in the dark, knowing that giving these supplements is warranted in quite a big way. We've been dosing some form of activated folate for a long time and increased it when we learned of the MTHFR genetic variations we both carry, We've always seen improvements with it. It's nice when the gains increase and continue.
I've heard so many things about autism over the years. As time has gone on, my belief in a biological basis has only been strengthened and I do not see this changing in the slightest.
With time though comes a disregard for how others' comments affect you. When we started this process, I felt self-conscious. I doubted. I wondered if we were indeed delusional, sad, unaccepting, unloving, desperate for a child other than our own. I took each attack on biomedically engaged parents personally and I would respond. Now, I don't. I know that the ultimate love for a child guides a mother who wants answers. I don't doubt our approach. Not for a second. The proof stands in front of me. A child who was diagnosed with moderate to severe classic autism just a few years ago played in a hockey tournament this past weekend. He scored 2 goals in his first game of 8 in total over the weekend. Not a 'special' league. A regular ice-hockey team. If I'm wrong, then I'm just the luckiest person on the planet. My son makes me so incredibly proud. He's funny, engaging, imaginative, expressive, loving and social. He's so much more than a label given by a lazy doctor 5 years ago.
If you are even thinking about a biomedical approach for your child, do it, please. Make it your resolution to try something new, because, at the end of the day, you will not move mountains with behavioural therapy, even if it is somewhat helpful, because, whilst biology can determine behaviour, behaviour cannot alter biology. Look at the cause, not the symptoms.
My wish this year is always for answers and progress. For our family and for yours.
Happy holidays!
Wednesday, November 26, 2014
Thankful
So, here we are on the eve of a holiday that I didn't grow up with, but, I am growing ever more fond of. First off - I LOVE a turkey dinner. I might not be a fan of the dodgy green bean casserole, but, I can eat my body weight in turkey, stuffing and mashed potatoes.
The concept of "being thankful"transcends religion or belief, or lack thereof, race, gender, special needs and none. I am so very very thankful, despite the bumps in the road.
I am thankful for the progress our son has made.
I am thankful for the friends I have made along the way.
I am thankful for the internet! I never would've learned all the things I have without it.
I am thankful for my mum's intuition. It has led me correctly many times.
I am thankful for my husband and family's support.
I am thankful that my parents raised the furthest thing from a shrinking violet I could imagine.
I am thankful for Tom's excellent teachers along our journey.
I am thankful for our amazing therapy team.
I am thankful for our health insurance, without which we could not have learned and treated all that we have.
I am thankful for a husband that trusts my research and reasoning and respects a new protocol.
I am thankful I was able to stay home with Tom to get him to this point.
I am thankful I have been able to help others through our experiences.
This one probably sounds weird, but, I am thankful we have found problems. Problems we could fix and treat.
We have been so very fortunate and this time of year is a good time to remember that.
Here are a few Thanksgiving resources I have found...
A social story for Thankgiving - http://www.autismspeaks.org/sites/default/files/docs/thanksgiving_social_story.pdf
GFCF Thanksgiving Recipes
http://glutenfreegoddess.blogspot.com/2008/11/thanksgiving-recipes-tips-for-gluten.html
http://www.adventuresofaglutenfreemom.com/2011/11/how-to-have-the-best-gluten-free-thanksgiving-and-a-recipe-roundup/
http://www.tacanow.org/family-resources/thanksgiving/
http://www.generationrescue.org/latest-news/nutrition/thanksgiving-dinner-on-a-special-diet/
Happy Thanksgiving All!
The concept of "being thankful"transcends religion or belief, or lack thereof, race, gender, special needs and none. I am so very very thankful, despite the bumps in the road.
I am thankful for the progress our son has made.
I am thankful for the friends I have made along the way.
I am thankful for the internet! I never would've learned all the things I have without it.
I am thankful for my mum's intuition. It has led me correctly many times.
I am thankful for my husband and family's support.
I am thankful that my parents raised the furthest thing from a shrinking violet I could imagine.
I am thankful for Tom's excellent teachers along our journey.
I am thankful for our amazing therapy team.
I am thankful for our health insurance, without which we could not have learned and treated all that we have.
I am thankful for a husband that trusts my research and reasoning and respects a new protocol.
I am thankful I was able to stay home with Tom to get him to this point.
I am thankful I have been able to help others through our experiences.
This one probably sounds weird, but, I am thankful we have found problems. Problems we could fix and treat.
We have been so very fortunate and this time of year is a good time to remember that.
Here are a few Thanksgiving resources I have found...
A social story for Thankgiving - http://www.autismspeaks.org/sites/default/files/docs/thanksgiving_social_story.pdf
GFCF Thanksgiving Recipes
http://glutenfreegoddess.blogspot.com/2008/11/thanksgiving-recipes-tips-for-gluten.html
http://www.adventuresofaglutenfreemom.com/2011/11/how-to-have-the-best-gluten-free-thanksgiving-and-a-recipe-roundup/
http://www.tacanow.org/family-resources/thanksgiving/
http://www.generationrescue.org/latest-news/nutrition/thanksgiving-dinner-on-a-special-diet/
Happy Thanksgiving All!
Tuesday, November 18, 2014
Why Can't The Autism Community Either Get Along, or Just Agree To Disagree?
I posted this originally on our family blog in May 2012, but, the issue still irritates me.
The autism community is as divided as ever. Even us as parents judge those who want 'recovery' or don't. There is no 'right' choice, there is only your choice. But, when someone actually does something and that something helps kids function better, or keeps them safer, or brings some awareness to the possibility that children with autism can, maybe, recover, that should be celebrated in my opinion.
I saw this posted today on someone's FB page and quite frankly it made my blood boil.
Apparently, a mother is less than impressed with Jenny McCarthy's decision to pose for Playboy again.
I was at AutismOne last week and was there for her keynote speech, where she explained her rationale, it being, her son needs some very expensive educational interventions and the rest is going to Generation Rescue. I commend her for this. So what if she is somewhat of an attention-seeker? At least she uses her celebrity to try and make a difference. No-one has to do anything. John Travolta sure as hell didn't do a god damned thing for autism, or ultimately his own son. That to me is the tragedy.
The mum in this blog post says "Because while posing for Playboy may, in fact, garner a truckload of money for your organization, Generation Rescue, it’s not going to do a damn thing for my two kids with autism". I wonder if this mother has any idea what Generation Rescue does with their money. They have a huge family grant program that this mother has the option of applying for, if she would like. Has she ever used their website? Has she ever called a Rescue Angel, a volunteer parent who can support a family?
Also, why does this particular person have it in her head that it's Jenny McCarthy's job to do something for her children? Love her or hate her aside, it is not her responsibility to take care of other people's children. That's our job as parents.
The autism community is fractured enough. Obviously, from the rest of her rants this particular mum is not on the biomed side of the fence, and that's fine, we all make our own choices on what we feel is best for our children, but, I for one, and many of my friends have seen enormous benefits from biomed.
It's not quackery.
There are many studies highlighting immune differences in children with ASD. To me, to ignore that science is the quackery, bury-your-head-in-the-sand attitude. Biomed isn't easy, but it can pay off. All children are different. Some respond, some don't.
Also, to question recovery is stupid. Recovery to me means that a child firstly no longer meets diagnostic criteria for autism. Even the NIH I believe has figures that say that a certain percentage of children 'recover' from their diagnosis. The whole world is a spectrum, both typical and ASD and recovery to me means that a child moves onto the typical spectrum. Even 'typical' children can have problems, but they don't impact their daily living to the point of ASD impairment. No-one in the biomed field (including JM) uses the term 'Cure', it's 'Recovery'.
The comments are also utter crap. Here's where you get the whole 'I've not gone down this road, not done any research and I accept my child will not recover' band jumping on the wagon. If you people want to accept this outcome for your children, go right ahead and enjoy. I will not accept that and I will not discount other approaches for my son who continues to thrive. I take a skeptical viewpoint on many of the new 'crazes' that will always be around, as I believe my previous posts have shown. But, I am not closed-minded. I am not anti-vaccine, even though I choose not to further vaccinate my son, since neither I or his doctor feel it's appropriate for him. I don't feel my son should be the sacrificial lamb for one commenter who feels everyone should take that vaccination risk to protect her.
People need to realize they are in control of their child's future, just as Jenny McCarthy is in control of hers. And it's about time people stopped with the bashing. Mind your own business people and focus on your own life, rather than the fact that someone else out there has a better body, more appeal and more drive than you or I will likely ever have.
The autism community is as divided as ever. Even us as parents judge those who want 'recovery' or don't. There is no 'right' choice, there is only your choice. But, when someone actually does something and that something helps kids function better, or keeps them safer, or brings some awareness to the possibility that children with autism can, maybe, recover, that should be celebrated in my opinion.
I saw this posted today on someone's FB page and quite frankly it made my blood boil.
Apparently, a mother is less than impressed with Jenny McCarthy's decision to pose for Playboy again.
I was at AutismOne last week and was there for her keynote speech, where she explained her rationale, it being, her son needs some very expensive educational interventions and the rest is going to Generation Rescue. I commend her for this. So what if she is somewhat of an attention-seeker? At least she uses her celebrity to try and make a difference. No-one has to do anything. John Travolta sure as hell didn't do a god damned thing for autism, or ultimately his own son. That to me is the tragedy.
The mum in this blog post says "Because while posing for Playboy may, in fact, garner a truckload of money for your organization, Generation Rescue, it’s not going to do a damn thing for my two kids with autism". I wonder if this mother has any idea what Generation Rescue does with their money. They have a huge family grant program that this mother has the option of applying for, if she would like. Has she ever used their website? Has she ever called a Rescue Angel, a volunteer parent who can support a family?
Also, why does this particular person have it in her head that it's Jenny McCarthy's job to do something for her children? Love her or hate her aside, it is not her responsibility to take care of other people's children. That's our job as parents.
The autism community is fractured enough. Obviously, from the rest of her rants this particular mum is not on the biomed side of the fence, and that's fine, we all make our own choices on what we feel is best for our children, but, I for one, and many of my friends have seen enormous benefits from biomed.
It's not quackery.
There are many studies highlighting immune differences in children with ASD. To me, to ignore that science is the quackery, bury-your-head-in-the-sand attitude. Biomed isn't easy, but it can pay off. All children are different. Some respond, some don't.
Also, to question recovery is stupid. Recovery to me means that a child firstly no longer meets diagnostic criteria for autism. Even the NIH I believe has figures that say that a certain percentage of children 'recover' from their diagnosis. The whole world is a spectrum, both typical and ASD and recovery to me means that a child moves onto the typical spectrum. Even 'typical' children can have problems, but they don't impact their daily living to the point of ASD impairment. No-one in the biomed field (including JM) uses the term 'Cure', it's 'Recovery'.
The comments are also utter crap. Here's where you get the whole 'I've not gone down this road, not done any research and I accept my child will not recover' band jumping on the wagon. If you people want to accept this outcome for your children, go right ahead and enjoy. I will not accept that and I will not discount other approaches for my son who continues to thrive. I take a skeptical viewpoint on many of the new 'crazes' that will always be around, as I believe my previous posts have shown. But, I am not closed-minded. I am not anti-vaccine, even though I choose not to further vaccinate my son, since neither I or his doctor feel it's appropriate for him. I don't feel my son should be the sacrificial lamb for one commenter who feels everyone should take that vaccination risk to protect her.
People need to realize they are in control of their child's future, just as Jenny McCarthy is in control of hers. And it's about time people stopped with the bashing. Mind your own business people and focus on your own life, rather than the fact that someone else out there has a better body, more appeal and more drive than you or I will likely ever have.
Monday, November 3, 2014
To Medicate Or Not To Medicate.....?
When a child is diagnosed with modern medicine, there always follows the question "is there a medicine that can help?". In the case of autism, the answer is both yes and no. There are medications that can help with some of the symptoms of autism, but there is no medicine for autism.
Some of the symptoms people look to address in autism are aggression, anxiety, hyperactivity, inattention, sleep problems, depression and impulse control. There are medicines that can help with these.
Whether you choose to medicate your child is a decision you alone have to make as a family. Your child's needs are individual. Your family's needs are unique.
We personally have chosen to not medicate. That is not a decision that will change for us. But, we are not you or your family. I have friends who have chosen the medication route with their child and I don't judge them for it. If your 7 yr old child has such anxiety that they are expressing suicidal thoughts, frankly, you need to do whatever you can to help them and if medication does that, go for it.
I would say though, before you consider medication, try other things that are less harmful. Consider melatonin, lavender, bed time routines before sleep medications. Look to the source of the problem. If your child has anxiety, could it be related to sensory difficulties? If so, work with your child's occupational therapist to design sensory strategies to address this, such as a weighted blanket or compression clothing.
If your child has aggression problems, work with an ABA therapist to determine what might be triggering the behaviour - could it be frustration? Where does that frustration come from? Maybe it's something as simple as your child not being able to communicate their needs.
There are many therapeutic professionals that can be a lifeline and address the core problem of a behaviour without ever needing to resort to medication. They might be able to remediate the deficit to where there is not a behaviour anymore, or teach the child to work around or cope with the issue.
If you've exhausted the options out there though and you and your doctor feel it could help, be open to the possibility, but be very mindful about the side effects that could come with medication.
Remember autism is not diagnosed using biomarkers, ie, levels within the body's chemical makeup. You are treating with chemicals that alter those biomarkers with no way to measure what else they might affect. Always educate yourself.
There are a couple of big red flags for me with medication and they should be for you too.
- If a doctor tries to prescribe medication before therapy. ABA is proven to help with autism symptoms and it doesn't have side effects (at least biological ones). If a doctor suggests risperdone before considering what the AAP (American Academy of Pediatrics) recommends, run - do not walk, away from that office.
- If a school suggests your child needs medication. Schools are in the education business, not the medication one. It is beyond their professional scope to suggest ANY medication intervention for your child. A great comeback if ever faced with this in an IEP meeting is to simply ask where that person earned their MD. If they state they don't have one, remind them that they are therefore not qualified to comment on medical issues and that any decision regarding medication is made between yourself and your child's doctor. Schools often like medicated children, they are easier to manage and there is less they will need to do to meet their needs. The cost of course is to the child, if they have long-term irreversible side effects.
Again, the take away from all of this is that your child is an individual - treat their needs, not someone else's.....
Some of the symptoms people look to address in autism are aggression, anxiety, hyperactivity, inattention, sleep problems, depression and impulse control. There are medicines that can help with these.
Whether you choose to medicate your child is a decision you alone have to make as a family. Your child's needs are individual. Your family's needs are unique.
We personally have chosen to not medicate. That is not a decision that will change for us. But, we are not you or your family. I have friends who have chosen the medication route with their child and I don't judge them for it. If your 7 yr old child has such anxiety that they are expressing suicidal thoughts, frankly, you need to do whatever you can to help them and if medication does that, go for it.
I would say though, before you consider medication, try other things that are less harmful. Consider melatonin, lavender, bed time routines before sleep medications. Look to the source of the problem. If your child has anxiety, could it be related to sensory difficulties? If so, work with your child's occupational therapist to design sensory strategies to address this, such as a weighted blanket or compression clothing.
If your child has aggression problems, work with an ABA therapist to determine what might be triggering the behaviour - could it be frustration? Where does that frustration come from? Maybe it's something as simple as your child not being able to communicate their needs.
There are many therapeutic professionals that can be a lifeline and address the core problem of a behaviour without ever needing to resort to medication. They might be able to remediate the deficit to where there is not a behaviour anymore, or teach the child to work around or cope with the issue.
If you've exhausted the options out there though and you and your doctor feel it could help, be open to the possibility, but be very mindful about the side effects that could come with medication.
Remember autism is not diagnosed using biomarkers, ie, levels within the body's chemical makeup. You are treating with chemicals that alter those biomarkers with no way to measure what else they might affect. Always educate yourself.
There are a couple of big red flags for me with medication and they should be for you too.
- If a doctor tries to prescribe medication before therapy. ABA is proven to help with autism symptoms and it doesn't have side effects (at least biological ones). If a doctor suggests risperdone before considering what the AAP (American Academy of Pediatrics) recommends, run - do not walk, away from that office.
- If a school suggests your child needs medication. Schools are in the education business, not the medication one. It is beyond their professional scope to suggest ANY medication intervention for your child. A great comeback if ever faced with this in an IEP meeting is to simply ask where that person earned their MD. If they state they don't have one, remind them that they are therefore not qualified to comment on medical issues and that any decision regarding medication is made between yourself and your child's doctor. Schools often like medicated children, they are easier to manage and there is less they will need to do to meet their needs. The cost of course is to the child, if they have long-term irreversible side effects.
Again, the take away from all of this is that your child is an individual - treat their needs, not someone else's.....
Sunday, November 2, 2014
Zinc...
Our son's zinc level is low and he appears to be just the same as his mum - zinc supplements make him nauseous. The problem seems to be that zinc supplements in capsule or powder form are so concentrated that the dosage is just too high. It's apparently a common problem with zinc.
We've tried giving it to him at bed time, after dinner, but, again, anything more than a 50% RDA (recommended daily amount) makes him nauseous. I often wonder if there is such a thing as the more deficient you are, the more nauseous you become when you try to replace it. Add to this that zinc is best absorbed on an empty stomach, which is clearly not an option.
Zinc is needed for so many immune functions - not rebuilding his stores is simply not an option.
I think I finally found a solution though - Ionic Zinc, from New Beginnings. It's a liquid form where 1 drop = 10% of the daily amount. No, I'm not paid to recommend this, but, I wanted to share a solution that we have found. Now I can supplement very easily, in drinks throughout the day. Perfect!
We've tried giving it to him at bed time, after dinner, but, again, anything more than a 50% RDA (recommended daily amount) makes him nauseous. I often wonder if there is such a thing as the more deficient you are, the more nauseous you become when you try to replace it. Add to this that zinc is best absorbed on an empty stomach, which is clearly not an option.
Zinc is needed for so many immune functions - not rebuilding his stores is simply not an option.
I think I finally found a solution though - Ionic Zinc, from New Beginnings. It's a liquid form where 1 drop = 10% of the daily amount. No, I'm not paid to recommend this, but, I wanted to share a solution that we have found. Now I can supplement very easily, in drinks throughout the day. Perfect!
Wednesday, October 29, 2014
Always Something New....
There is ALWAYS something new with autism, something I was reminded of last night as we got some test results back we've been waiting a few weeks for.
I remember reading about Lyme disease a few years ago. I've also heard various things over the years about children with autism having higher incidences of Lyme infection. Don't quote me on that though, and I believe there was (and remains) some controversy about this.
There are lots of people who *think* they have Lyme and even the medical community as a whole believes the true incidence of Lyme is much higher than reported to the CDC .
Lyme is tested for with a 2 step process. The first step is an IFA (indirect immunofluorescence assay) and if this is positive, or equivocal (ie, not quite sure), then the western blot is used.
The western blots look at 2 different antibody types, IgG and IgM and particular bands for it to be considered a positive result.
Lyme is difficult to spot in children, especially in the absence of the characteristic bullseye rash. There are several symptoms though that have a lot of crossover with autism and ADHD - including difficulty concentrating and cognitive problems. Lyme disease can also produce headaches and joint pain.
I had seen this last year and thought it would certainly explain some of our son's symptoms, so I had him tested. Our local lab test showed him positive for one of the bands, a band that is specific for flagella (the tail portion of a bacteria). So, we decided to go ahead and have an IGeneX test battery run. IGeneX are a lab that specializes in lyme testing. The test results came back yesterday and even I am surprised at them.
Our son tested postive for Lyme. He didn't have just a few bands either - he meets the strict CDC criteria for it.
He tested positive on the IFA (a value >80).
The IgM Western Blot showed positives for bands 18, 39 and 41 and indeterminate for 31 and 83-93, so he meets the CDC criteria for IgM testing (positives for 2 or more of bands 23-25, 39 and 41).
The IgG Western Blot showed positives for bands 28, 30, 31, 34, 39, 41 and 58, which again meets the CDC criteria for Lyme diagnosis (5 or more of bands 18, 23-25, 28, 30, 39, 41, 45, 58, 66 and 83-93).
Where we go from here, who knows, but we have a follow up appointment next week.
What is certainly interesting though is the thought that so many of our son's lingering issues overlap with the symptoms of Lyme Disease.....
I remember reading about Lyme disease a few years ago. I've also heard various things over the years about children with autism having higher incidences of Lyme infection. Don't quote me on that though, and I believe there was (and remains) some controversy about this.
There are lots of people who *think* they have Lyme and even the medical community as a whole believes the true incidence of Lyme is much higher than reported to the CDC .
Lyme is tested for with a 2 step process. The first step is an IFA (indirect immunofluorescence assay) and if this is positive, or equivocal (ie, not quite sure), then the western blot is used.
The western blots look at 2 different antibody types, IgG and IgM and particular bands for it to be considered a positive result.
Lyme is difficult to spot in children, especially in the absence of the characteristic bullseye rash. There are several symptoms though that have a lot of crossover with autism and ADHD - including difficulty concentrating and cognitive problems. Lyme disease can also produce headaches and joint pain.
I had seen this last year and thought it would certainly explain some of our son's symptoms, so I had him tested. Our local lab test showed him positive for one of the bands, a band that is specific for flagella (the tail portion of a bacteria). So, we decided to go ahead and have an IGeneX test battery run. IGeneX are a lab that specializes in lyme testing. The test results came back yesterday and even I am surprised at them.
Our son tested postive for Lyme. He didn't have just a few bands either - he meets the strict CDC criteria for it.
He tested positive on the IFA (a value >80).
The IgM Western Blot showed positives for bands 18, 39 and 41 and indeterminate for 31 and 83-93, so he meets the CDC criteria for IgM testing (positives for 2 or more of bands 23-25, 39 and 41).
The IgG Western Blot showed positives for bands 28, 30, 31, 34, 39, 41 and 58, which again meets the CDC criteria for Lyme diagnosis (5 or more of bands 18, 23-25, 28, 30, 39, 41, 45, 58, 66 and 83-93).
Where we go from here, who knows, but we have a follow up appointment next week.
What is certainly interesting though is the thought that so many of our son's lingering issues overlap with the symptoms of Lyme Disease.....
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