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.....

Get A Hobby! You Never Know Where It Will Lead....

"Get a hobby!" were the words my husband said to me a few years ago after seeing me spend every waking moment since our son's diagnosis reading and researching autism.
He actually added the proviso "that has NOTHING to do with autism". It was a wake up call. I had become one-dimensional and obsessed and it had happened quite quickly. Maybe it's something to do with my personality, that I do tend to throw myself into things, but, it was a fact nonetheless and if my husband had noticed it, surely others had too.

My first new 'hobby' was ice-skating. After growing up watching Torvill and Dean, I loved the idea of learning to ice-skate. Since we live in Colorado Springs, the home of US Figure Skating and, ironically, also the home of Christopher Dean these days, we have 6 ice rinks in town, as well as a seasonal one for the holidays, I signed up for some lessons with a friend. I could ice skate badly as a kid, but hadn't been anywhere near skates for years, since I tore a knee ligament roller-blading.
It was fun to learn a new skill, but more importantly, it was good for me to try something new, that wasn't even remotely related to autism. This was for me. I did a few courses of lessons, so that now I can say that I've done a spin (poorly, but who's scoring?). My husband also took a course to learn how to skate, which I think was great for him too. We also through the course of this discovered that a therapeutic ice-skating program existed in town and we signed our son up too. Ice-skating turned into a whole family activity and now our son plays ice hockey on a local team - and loves it.
It was a great lesson for us though, to try new things and see where they led us!

The next hobby started as an interest a few years ago, when I saw a friend wearing a pendant at an autism conference. It was a fused glass puzzle piece and sparkled and caught the light - it was really pretty. I discovered there was an art glass store here in town and it also offered classes! I signed up and was instantly hooked. I also did a stained glass class and took on the big challenge of making the stained glass design for our front door.

Aspens!

It has become so much more than a rewarding hobby. It's also turned into a little business.

I met other crafters in town and we formed a Facebook group to sell locally, year-round. I also started doing local craft fairs and opened an Etsy store.
Inspired by the pendant I saw on my friend, I also started making some autism awareness items and love how they turned out. I've done custom orders for friends and also donate a portion of the sale to an autism non-profit. It's a way of giving back, raising awareness, but also supporting my own sanity in one go!

Puzzle piece pendants

So, whilst your child will undoubtedly (and absolutely should) be your number one priority, you mustn't forget yourself in the whirlwind of parenting a special needs child. Your child (and your spouse if you have one) needs a happy, balanced parent. Whether it's going to the gym, making things, painting things, horse-riding or gardening, it's important to have things just for you. It will help with your sense of self and keep your confidence higher. Whilst we all live for our children, we cannot live solely for them.
If you've spent so long absorbed in autism you're not even sure what you enjoy anymore, try something new! Take a class or join a friend who might have a hobby you think sounds interesting. Try and do something that both gets you out of your home, with other people and also takes you away from your computer and autism. You'll feel better and be happier, I promise!

Perspective

The most important thing I've learned since our son was diagnosed with autism at the age of 2 is perspective.
Don't get me wrong, it truly sucks sometimes. I've heard every cliche out there about how 'this is god's plan', or that 'special children are only given to special people' and that 'god only gives you what you can handle'. There is a slight problem with every one of those phrases, for me anyway - I'm atheist. I don't feel this is part of anyone's plan, certainly not mine. I also think for a divine being to punish a child with challenges is nonsense frankly. I think people feel the need to say something, even when there is no need. Anyway, away from the religious discussion...

The thing that has helped me more than anything is getting a sense of perspective.

Our son has challenges, but who doesn't? There are plenty of challenges that typically developing children and adults have and society these days can stress out anyone.

I have friends with children who have much bigger challenges. Some have life-threatening allergies - where something as harmless to most as a peanut can kill them. Some have constant seizures. Some have other disabilities. Some cannot function in a regular classroom. Some can barely attend any form of school. And their parents soldier on with unconditional love for their children and unending hope.

Every time I feel down, that our life is harder than someone else's, I remember a few things. Our life, whilst not easy, is much easier than that lived by many others. I also remember that we live in a social media driven world, where people craft their public image to portray an idyllic family life. It's not always like that in reality and in the same way that magazine covers are photoshopped within an inch of their life, a similar thing happens on Facebook and Instagram. The chances are, those 'perfect' family scenes are often far from, or just represent a snapshot in time and nothing more. No doubt your family, with enough pictures could achieve a similar result, but families with special needs children are usually too busy to be doing with 500 pictures a day.

We are fortunate. Our son has come so far since his diagnosis, which was, to say the least, grim. He is able to communicate. He attends a regular school. He can function in a normal classroom. He has teachers and therapists to support his journey. He makes constant strides. He has friends. He finds joy in life.

One of my friends works in the psychology field and whilst in the UK recently we were talking about her work on gratitude. There have also been several Facebook activities floating around recently where people have to list a few things they are grateful for. There is research to support that this kind of activity can actually help with depression. Isn't that better than an 'upper'? (and cheaper too)

The next time that you're feeling down about your child's condition, think of the things you are grateful for. Sometimes that can be as simple as thinking how much worse a condition can be. The sense of gratitude can be directly linked to your perspective of a situation. If it helps, write it down. Focusing on the positive will help you move away from the negative.

I Want To Start Biomedical Treatments But I'm Not Sure How To...

I've heard this more than once from friends and acquaintances.
For those looking beyond the AAP-dictated course of therapy, therapy and more therapy (that insurance often doesn't cover), the path of biomedical intervention can be very daunting.

Fear not. There are TONS of resources out there that can help guide you down this road.

A great starting point for this is TACA. TACA has a really good website that even includes a roadmap for those starting a biomedical treatment protocol.

I will add here that the biomedical interventions we've done with our son have been more effective than almost any therapy, or, they have helped our son benefit from his therapy by increasing his awareness.

I prefer to take the route of testing, then treating according to the test results. We've personally had good results using this method.

Some of the tests can be run with a co-operative primary care doctor and are standard lab tests that most of the big labs can run (Quest / Labcorp) and others are a little more specialised and need to be run via specific labs (Great Plains Lab / Iliad etc). If your doctor won't help you along with this journey, you might want to consider switching providers, or adding a MAPS Doctor to your child's healthcare team. When you work with your doctor, ensure they are working in a logical order. Start slow and tackle no more than 3 things per appointment. You don't want to change 50 things immediately - then you will have no idea which are effective and which are not. Be skeptical of a doctor who suggests you do this.

The first intervention we did was diet. It helped resolve the gut problems that must've been causing a lot of pain for our son. His constant diarrhea ceased and the bloated belly he had went away. He started eating new foods and his health appeared to improve.

The next one was to run allergy testing (blood) and liver enzymes. Many children with autism have altered immune function, our son included. He had allergies to milk and eggs and approximately 19 other food intolerances. We decided to remove the foods he was reactive to, to give his immune system time to recover.
His liver enzymes were also 'off'. This tends to indicate that his body was having trouble processing toxins properly.

After this, we tested for blood lead (positive) and vitamin status (low). Aside from any other behavioural issues, we had a child with abnormal lab tests. We gradually supplemented with vitamins  and herbs to support the biological processes involved with removing toxins.

I think when people hear others throwing around the word 'toxin' they assume that person is some kind of new age hippy type that drinks green juices and eats lots of flax and quinoa. Well, I suppose there is some truth to the stereotype, but green juices often contain those substances to support the body's detox processes. Yes - the body does have them. It's how it expels toxic substances and maintains health. The main organ for this is the liver. When your liver isn't working properly, you will be sick - no question about it.

Anyway, these are great first steps -

1 - Diet. Ensure your child is getting good nutrition. Avoid processed food and instead try to introduce fresh whole foods. If your budget permits, try and replace the "Dirty Dozen" foods with the organic versions.

2 - Investigate allergies. If your child has allergies to the food they're eating, their body will react accordingly. They may have gastrointestinal problems, skin problems and feel generally unwell. Remove offending foods to give their body time to heal and recover.

3 - Check nutritional status. Is your child low in vitamin D or zinc? These are very common in children with autism and they affect immune function. If your child is low, consider getting them a vitamin supplement to improve the levels. For vitamin D make sure you use the D3 version which is more bioavailable and the form found naturally in the body. Here is a good article discussing the differences. We've got our supplements for years through ourkidsasd.com. They have a good selection and decent pricing. Don't buy them through your doctor's office - they tend to be very expensive that way.

4 - Run stool tests. Many children with autism have altered gut bacterial populations. They often have invasive bacteria in much higher levels than are normal. Gut bacteria are vital for proper nutritional absorption. A great stool test is the one offered by Great Plains Lab. They will also culture out the abnormal bacteria and test various natural and prescription agents to see how to eradicate it, or to reduce the levels to normal. Sometimes your doctor will recommend antibiotics or antifungals, but remember to also supplement with some probiotics to rebuild the gut flora with the bacterial species that should be present. Stool tests are usually covered by insurance.

Just these 4 steps should show you enough as to whether a biomedical path will be beneficial for your child.

Disclaimer - I am not a doctor (of medicine), nor should this be construed as medical advice. Be sure to discuss your child's healthcare fully with their physician. 

The Benefits of Volunteering

One of the best ways I found to connect with people and learn way more about autism than I ever wanted to was to volunteer. It has also taught me a lot on a personal level. I've volunteered with several organisations over the past 5 years or so.

I helped fundraise for a conference I attended for several years. Through this organisation I was able to learn a huge amount about the biomedical side of autism, where I feel the most promise exists. I was able to connect with families from all over the country and we compare and contrast what we've implemented and if it has helped our child. I was able to mingle with the very researchers that are trying to unravel the mysteries of autism. It's a great way to feel empowered and to get new ideas. It also helps cut down on the cost of attending some of the conferences, since many organisations have discounts for volunteers.

I have volunteered with American Military Families Autism Support (AMFAS) for the past 4-5 years. Since AMFAS' stance is to respect all treatment approaches, it has really helped me to be considerate in how I phrase things. Everyone has their faults and one of mine is my tendency to rush to judgement. I try to keep the AMFAS position in my head. As it is my right to choose a biomedical path to healing and recovery, others prefer to use a 100% therapy model as their strategy. Many of my friends don't use biomedical interventions and their children are also doing well. I try to remember that each child is different. For my child, I know that the biomedical approach is the right one, for others who maybe didn't see immune or gastrointestinal problems, maybe it would not yield as noticeable results. As in normal parenting, we each choose our battles and we have that right, without other parents judging us. After all, life with a child with autism is hard enough without those who should be our allies becoming our critics.

Through my involvement with AMFAS I also learned to advocate and educate. I have become very adept at reading military policies pertaining to the care of military children with autism and educating other families on the implications of these policies.

Another benefit of volunteering is that you feel useful. Parenting a child on the spectrum is very hard work. It's unrelenting and exhausting. Connecting with other parents helped me detach from my own situation and feel like I was helping. Helping other families. Helping other children. It's something that will lift your mood and reassure you that you are making a difference, even if your own child is taking two steps forward and one back.

So - my advice? Find an organisation you connect with and volunteer! Choose an organisation that you believe in their mission (whether or not it relates to autism). Many parents of children with autism find it impossible to work, especially in the early years of many appointments, before full time school comes along. Get out there. Get out of your own home and connect with people. You might meet people who change your mindset and your life. At the very least, you will feel that you contributed to something in the world and made a difference.
Be choosy and careful with your time though. I can speak from personal experience on this one. There are many organisations out there that will suck every second of your time. Remember that your primary job is your child and everything else comes second. If you are able to allocate a specific amount of time for volunteer activities, make sure you stick to it.

My Child Has A Diagnosis. Now What?

When our son was diagnosed, we were given a copy of the Autism Speaks 100 Day Kit. I read some of it and then got to work - basically, 100 days was much too long.
As time has gone on, I've thought carefully about what I would do if I had the time over. We moved within 30 days of our son's diagnosis, which involved a change of doctor and all those other services he now needed.
I will break down for you what I think are the best concrete steps to take.

1 - Hug your child. Lots. This sounds silly, but, it's a hard thing to hear, that your child has autism. You need to have the strongest bond possible with your child. You have lots of work to do together.

2 - Find out what your health insurance covers. In the US, different policies cover differing levels of services. Our insurance through the military is pretty comprehensive and covers Speech Therapy (ST), Occupational Therapy (OT) and Applied Behavioural Analysis Therapy (ABA). Also figure out what quantity of services your child can receive and your cost share. These 3 therapies are the main ones used in the treatment or remediation of autism. Some children also need Physical Therapy (PT).

3 - If your child needs a referral for these services ask your doctor to put them in. Depending on the doctor and insurance policy, you might also need prior authorization. Ensure you jump through those hoops that your insurance requires since the costs will pile up quickly. You do not want to find out they won't pay for services because you forgot something.

4 - If your child is not already receiving services through your state's Early Intervention program (for under 3 year olds) or through your local school district (3 and over), contact the appropriate agency for your area. They can provide social groups, speech and occupational therapy and in some cases behavioural therapy. Once a child is 3, the responsibility for those services switches to the local school district. School districts can be a great resource or a nightmare, depending on both how they operate and how you advocate for your child's needs. Our son attended the local preschool for our school district and they were fabulous. Look for an inclusion (a mixed environment of both typically developing children and children who need additional help) setting if you are able. If your child is already in the school system and does not currently receive any kind of extra support (and they need it), talk with your child's teacher and principal and ask them to schedule a full evaluation for services.

5 - Find a support group. Even if the support is not local to you, trust me, you need to talk to people who are going or have gone through what you are. Facebook has a ton of support groups. Also look for organizations such as TACA or the Autism Society that have some local groups. Additionally, Generation Rescue has their "Rescue Angels" program, where an experienced autism parent can mentor you through this time.

6 - Keep an open and hopeful mind. You will hear and read all kinds of stories about how 'so-and-so's child' was 'cured' in 6 months. Whilst those stories can be true, they are often not. Do not let the miracles (real or not) drag you off to delusion land. On the other hand though, children do recover. They do lose their diagnosis. They do grow and develop and learn. They grow up to be independent and happy adults. The key is to always tailor any intervention to YOUR child, not anyone else's. The children who lose their diagnoses often do as a result of shear hard work and a little luck. They do not simply 'grow out of it'. There is no reason your child can't be one of those to lose their diagnosis though.

7 - Read. You will need to read everything you can get your hands on. Read as much as you can. I will post a book list of texts we found helpful at some point, but, in the meantime I'll give a couple here. One of the first books I read was "A Child's Journey Out Of Autism" by Leeann Whiffen. Their child did very well with a thoughtful and combined approach. That was what I needed - a book to give me hope. Another good book is "Healing The New Childhood Epidemics" by Kenneth Bock. A scientist by nature and education, I needed to understand what was happening from a biological standpoint. This book gave me a great start on where we should begin our son's journey to health.

8 - Consider your child's doctor. Is your child's doctor open-minded and a team player or are they condescending and aloof? Mention the thought of trying a new diet to them. If they dismiss it as 'nonsense', run for the hills. You will need your child's doctor to be a partner, not a dictator. You need a thoughtful and considerate person to help your child reach their potential. Whichever route you take for your child, whether or not you choose a biomedical approach, your child's doctor has a large role to play and both you and your child need to feel like you are supported and listened to. You will also need continuity of care, so if your child sees a different doctor every time, it might be time to move on. Just for time's sake, you do not want to be explaining yourself every time you go to the doctor's office. If you decide to switch doctors, ask other autism parents in the area who they like. If you decide to halt vaccinations, ensure you ask about the vaccination policies of those doctors. Some will no longer accept patients who do not vaccinate, or support those parents who want an alternate vaccination schedule.

9 - Take a good look at your child's diet. I cannot stress this enough. If your child limits food types, or does not eat any fruits or vegetables, you are going to need to do something. If your child has sensory issues, look into a feeding program at a local hospital OT department. These can be quite effective. Try and introduce new foods as much as possible and let them be real, whole foods, not processed food-like products. Your child needs the nutrients and any time a food is processed, you lose those.

10 - Depending on your insurance situation, schedule evaluations for OT, ST and ABA. Your insurance provider should be able to give you a list of approved local providers. It might be that your child doesn't need services, but, if they do, get started as soon as you can. Many providers have wait lists for these services, especially for appointments to coordinate with school hours.

There are probably a ton more things that I haven't listed here, but, this gets you started. Don't do nothing. If nothing else, get down to your child's level and play with them. You will be your child's 'rock' and they need to know that you 'get' them.

A great site for those with newly diagnosed children is TACA. That would be my first stop on the internet above all.

If there's anything I've missed, please feel free to comment!

Guilt

It is said that when you've met one child with autism, you've met one child with autism. They are ALL so vastly different in the challenges they face. There is one thing though that is common to almost all of the autism parents I have met. Guilt. We're all wracked by it. 

We all wonder what we could've done differently to have prevented it. Was it our genetics? Was it the fact that we (I) had a terrible Dairy Queen vanilla obsession during pregnancy?

Was it the tylenol I took? Was it the antibiotics? Was it the fact that I bottle-fed? Did I not spend enough time working on our son's development in a quality way? Why did I not see signs earlier?

Even our son's developmental pediatrician took the time to note in his history that I had consumed a glass of red wine in my third trimester (it was New Year's Eve) and had gained what he deemed to be 'excessive weight' in pregnancy. Forget the fact that I gained the same amount of weight as Gwyneth Paltrow had reported. I sincerely doubt he would've had the nerve to tell her that. Or, let's not forget that my OB had no problem with my pregnancy statistics, and I would hazard that they knew more about pregnancy than a developmental pediatrician. I also offer that if I were French, they would have no problem with me consuming a single glass of red wine in 9 months. 

So, it's not just guilt that we create for ourselves, others like to heap it on too. 

Here's my advice. You cannot totally lose the guilt. It never really goes away. You learn to live with it. You trust that you did the best you could and you move forward from this point. 

If your child has a genetic issue, accept that sometimes things just happen. If you think environmental exposure was a contributor, then learn all you can about it and if it's possible to reverse. Put your energy into something constructive. Guilt can paralyze you, don't let it. 

If you're in a relationship, don't blame each other. No-one would intentionally create such a hard life for themselves or their children. You have to be a team. You have to work together. 

If you're having trouble letting go of some of the guilt you carry, find a group of parents who can help you. Autism parents, just like their children, come in all shapes and sizes, political and religious persuasions - there will be some who you click with. Seek out others who understand what you're going through and will want to help you move forward. 

Diets!

Those of us who don't have autism are bombarded with diets. There is a new diet fad every few months it seems, all endorsed by celebrities to boot. There's Atkins, Dukan, Flat-Belly (yes - I own the book, no - I never followed it, aside from the fantastic suggestion of having dark chocolate with every meal - genius!), gluten-free for other reasons than celiac disease, paleo, the list goes on.
Some of these diets have great components and frankly, can't be any worse than the typical American diet of processed boxes of corn with some ground corn-fed meat in it. Ick.

The autism community is no different in that there are TONS of different diets that some on the almighty internet will swear that it has 'cured' their child.
Let me touch on a couple of the main ones that people use. I will discuss some of the others at a later date, and I'll also go into more detail on these.


Feingold

The Feingold Diet is commonly associated with ADHD and is based on the premise that food additives can cause behaviour problems in children. They have a great website here. This is a diet that is relatively easy to adjust to, after all, which parent hasn't said to a child "no, you can't have skittles, they make you bonkers", or words to that effect. For children when I was growing up, it was orange smarties (the chocolate-centered, sugar coated variety in the UK). Dyes and other additives are common in the American processed food diet. Feingold simply says try to remove those additives - give your child 'cleaner' food and their behaviour might improve. It often does.

There is research to support the interaction of food dyes, additives and behaviour problems and so to save me re-inventing the wheel, the Feingold site has listed them all for your reading pleasure here.
If you want to try a diet but aren't sure you want to commit to a more restrictive alternative, give this a go. The worst thing you will achieve is knowing that your child is eating better, cleaner food. Some parents report a big change in children when they aren't fed junk, especially related to hyperactivity and attention.


GFCFSF (Gluten, Casein, Soy-Free)

It is a big change from a western diet to switch to a diet that is totally devoid of all dairy, wheat and gluten-containing products (including most oats, rye etc) and soy.

Gluten is the protein found in wheat and some other grains and is a hard one to avoid. Think of a diet without bread and pastry. No doughnuts, cakes, cookies. Additionally, gluten contaminates every surface and appliance you use.
OK - so now I've created a bleak picture, let me reassure you. Gluten is replaceable in many things. You can find gluten-free products everywhere now, thanks to Gwyneth Paltrow and other Hollywood types touting how it's the only way to eat, as well as a huge rise in celiac disease diagnosis in recent years. You many still need to get a new toaster though if you want to be 100% compliant.

Dairy is also a tough one to avoid. No cheese, milk, cream. It also makes treats more difficult. Milk allergy is common in children with autism - our own son was allergic to milk. Again, these days, milk substitutes are everywhere. We personally like coconut and almond milk, but, you can find rice, hemp and other nut milks that are good too. They can be used in cooking and taste great and coconut milk ice-cream is to die for. Yum. Coconut oil can be used as a butter substitute in cooking and baking.

America grows soy as if it was going out of style. Additionally, most soy is genetically modified, and, frankly, that's also cause for concern in my house. Anyway, soybean oil is in EVERYTHING. When you buy vegetable oil, it's actually soybean oil. Our son's old allergist told us that 50% or more of people who are reactive to milk are also reactive to soy, whether or not it shows in a test.

So - why is this diet a good idea? Its use is based on the fact that during testing of some children with autism, when they checked their urine, they found odd metabolites (byproducts of digestion). It turns out that when some of these proteins are digested, they break into chemicals (peptides) that have a particular effect on the brain, mimicking opioids. The gluten version of this opioid is known as glidaorphin and the milk version is casomorphin.
Some children with autism are thought to have a 'leaky gut', where the gut lining is not comprised as it should be of particular microbial species, but, instead has 'holes', which allow proteins and fragments into the blood stream, where they travel to the brain and have a less than desirable effect. Opioids are addictive. If you have a child with autism that self-limits to only dairy and gluten-containing foods, the chances are they are indeed craving them.
These metabolites can be tested for - Great Plains Laboratory is one place that can conduct testing on a urine sample. Do not stop eating the foods until you have completed the test.

Fear not that this is another 'magic bullet' or Jenny McCarthy-derived fad - there is actual research being done on this diet. One centre researching this subject is based in the UK and you can find information right here. Additionally, many parents report their child does well on this diet, including my own.
(For the record, I don't have a problem with Jenny McCarthy. Whilst I don't find her super-appealing as an entertainer, I think parents (and healthcare providers) should take note of the fact that she has a child with autism and that child is doing very, very well. Additionally, the opioid theory of gluten and dairy was suggested 30 years prior to her son being diagnosed with autism.)

Our son has followed this diet for around 5 years. He is much healthier than he was prior to it, has no growth problems and also has manageable gut problems now. It was life-changing for him and us. Within a couple of weeks of us starting this diet he pointed with his index finger for the first time (at a cow) and said "moo". His constant bowel problems also dramatically improved overnight.
He was in early intervention for speech as a toddler and one day his speech pathologist came to me and asked what I'd done, since for the first time in the months she'd been coming to our house, our son had actually been interested in her and what she had brought. This was a couple of days after us starting the diet. She was blown away and simply said "keep doing it".


Why consider a diet for your child with autism? Does your child have ANY bowel problems? Are they not having formed stools or are they constipated? Is there undigested food in their stool? Are they spacey? Do they crave and self-limit to certain foods? Is their behaviour manic or weird, well, beyond what would be considered 'normal weird'?

There is no harm to trying a diet. Food is not going to poison a child, nor cause chemical changes in their brain. I always find it strange that a pediatrician will be so adamantly anti-diet intervention, but, will hand out Adderall and Risperdone like sweets - medications that have known serious side effects.

I always thought this way - if my child is getting better food and is able to absorb those nutrients, then, it will be good for their body. They will be healthier and their behavoiur might also improve. I had a child who was getting sick regularly, clearly something was amiss with his immune system and this seemed a sensible step to take. It's not easy, but, for many, it has a massive effect on the well-being of a child.

My other advice is to not try to replace foods too much. Many gluten-free processed foods are little better nutritionally than their gluten-containing originals. Try and go back to basics. Offer some chicken with veggies. Give fruit for snacks. Use unsweetened, natural nut butters for more protein. Keep the treats to a minimum and try to avoid giving high sugar alternatives. Keep in mind that kids sometimes are irritable for a few days, but, it gets better and then you will find they will be willing to try more foods. Don't force it - if they don't want to eat everything you offer, ask them to at least try one bite. Kids get hungry and they won't starve themselves. Use your judgment as a parent, but, avoid giving in and going to the food you are trying to eliminate as a way out. You will have gone back to square one.
If you don't want to do this 'cold turkey' (which we did, but it might not be the way for your family), then start introducing those substitutes gradually, then, when you do eliminate those foods, you already have some replacements in place.

The final word on this for today is this - if you think your child has allergies, or you have a history of celiac disease in your family, please ensure that you get the appropriate testing done in conjunction with your doctor prior to doing any diet changes. Talk with your doctor about your plans. A supportive or open-minded pediatrician can be a great ally in your journey.

The DSM

The DSM is the 'bible' from which autism spectrum disorder (ASD) is diagnosed. The DSM is actually "Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)". 
The most recent version of this manual was issued in 2013, but with lots of controversy. 

In its former version (IV), the manual had the various diagnoses comprising ASD (Pervasive Developmental Disorder (PDD)) listed as their individual names, with slightly different criteria for each. These included Aspergers, Autism and PDD-NOS (pervasive developmental disorder - not otherwise specified). The newer version rolled everything in together under a big umbrella of Autism Spectrum Disorder.

The DSM-5 has faced much criticism ranging from accusations of non-disclosure and secrecy in the development of the manual, industry ties for the majority of the panel and the inclusion of normal processes of society now technically listed as mental disorders. Even the US National Institute of Mental Health (NIMH) has distanced itself from the document.

I personally have a problem with such subjective diagnosis of anything, especially when medications are handed out on the basis of essentially a checklist, with little other testing required. Anyway, our son was diagnosed according to the DSM-IV, the previous iteration.

The criteria for autism diagnosis under the new standards are these (courtesy of the CDC)

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
   1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
   2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
   3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

2. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
   1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
   2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
   3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
   4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

3. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
4. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
5. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

For a diagnosis of ASD, all the components must be met. I do have concerns that our son might not actually meet the new criteria for ASD diagnosis these days, but, he is technically grandfathered because of his diagnosis under DSM-IV. This is also a concern of many in the autism community, ie, what happens to children who might not meet the diagnostic criteria under DSM-5, who formerly would have under DSM-IV. Many health insurance programs (including ours) requires an ASD diagnosis for access to some forms of therapy, such as Applied Behavioural Analysis (ABA). Those children might well now not get the help they need to be independent adults. 

The explosion in autism occurrence (the current numbers are 1 in 68 children in the US) over the last 10 years gives me grave concerns as to why any changes in the criteria for autism diagnosis were made. How are we meant to track real changes in prevalence when the criteria has changed? Keeping in mind the current 1 in 68 number is from children born in 2002. We still have several years of data before our son is even included... 

Anyway, back to the DSM. Most developmental pediatricians will use other test batteries (including ADOS-2) to diagnose ASD, but, the DSM is the main one. My recommendation at this point with the DSM-5 is to ask your doctor to diagnose to BOTH DSM-IV and DSM-5 standards. That way you cover both sets of criteria and a doctor who might not diagnose under 5, if he/she sees that a child meets under IV might lean that way. 

I am a firm supporter of early diagnosis and thus treatment. A child can have the diagnosis removed if they no longer meet criteria after intervention, but, sometimes, as I explained above, it's the "label" that makes a child eligible for the services they might need to get them to that point. 

It is just a label and nothing more. Consider it an entry ticket if needs be. It does not change who your child is or how much you love them. It also does not change what they can achieve. 

After our son was diagnosed, we drove home from the hospital and I cried. For about 10 minutes. Then, I decided I would waste no more time grieving for a child who I hadn't actually lost. He was still my amazing, funny, beautiful little boy and was the same child who had accompanied us to that appointment. I would better spend my time on helping him to achieve all he could. We just needed to adjust the way we got there. 

What To Look For...

Most pediatricians will screen children at the age of 2 using the M-CHAT screening tool, but, you can also refer to this yourself using this site.

If you don't have a pediatrician, you can request developmental screening through your state. This is NOT the same as a full evaluation that will lead to a diagnosis.

The points of the M-CHAT are here (with full credit to firstsigns.org):

1. Does your child enjoy being swung, bounced on your knee, etc.?
2. Does your child take an interest in other children?
3. Does your child like climbing on things, such as up stairs?
4. Does your child enjoy playing peek-a-boo/hide-and-seek?
5. Does your child ever pretend, for example, to talk on the phone or take care of a doll or
pretend other things?
6. Does your child ever use his/her index finger to point, to ask for something?
7. Does your child ever use his/her index finger to point, to indicate interest in something?
8. Can your child play properly with small toys (e.g. cars or blocks) without just
mouthing, fiddling, or dropping them?
9. Does your child ever bring objects over to you (parent) to show you something?
10. Does your child look you in the eye for more than a second or two?
11. Does your child ever seem oversensitive to noise? (e.g., plugging ears)
12. Does your child smile in response to your face or your smile?
13. Does your child imitate you? (e.g., you make a face-will your child imitate it?)
14. Does your child respond to his/her name when you call?
15. If you point at a toy across the room, does your child look at it?
16. Does your child walk?
17. Does your child look at things you are looking at?
18. Does your child make unusual finger movements near his/her face?
19. Does your child try to attract your attention to his/her own activity?
20. Have you ever wondered if your child is deaf?
21. Does your child understand what people say?
22. Does your child sometimes stare at nothing or wander with no purpose?
23. Does your child look at your face to check your reaction when faced with
something unfamiliar?

Your child only needs to have 3 of these items to be abnormal to trigger more investigation.
Let's look at some of the main red flags, namely 6, 7, 10, 14, 5

6 and 7 were big ones for us. Our son used his hand, not an index finger.
10 is a classic indicator of autism, ie, lack of eye contact, but, it can also be a cultural issue, so be mindful of the cultures your child is exposed to with this one. There is also quite interesting research that says we shouldn't put so much stock in the concept of eye contact and that for some it is more of a distraction to what the person is saying or communicating verbally. RDI refers to it as 'facial gazing', but more on that front in another post. Our son had eye contact, then lost it.
14 is another one that our son did at around 9 months, but it had disappeared by 24 months. Again, classic regression, or loss of skills.
5 also formed part of the DSM-IV  (Diagnostic and Statistical Manual of Mental Disorders) autism diagnosis criteria  -a lack of pretend play skills. Our son did have some of these skills.

If your child has any of these signs, it is best to seek out more advice as soon as possible. Trust your gut - you know if things don't feel right. If you already have a child on the Autism Spectrum, you will probably recognize signs even earlier than the 2 year point they recommend this questionnaire be completed.

The main weakness of autism diagnosis is the fact that it is diagnosed and recognized by clinical observation, in other words, does a child have certain behaviour. There is no blood test. There are no biomarkers. Therefore the diagnosis procedure is somewhat subjective. Children respond better to some adults than others, especially if unfamiliar with them. One clinician will readily diagnose a child, another might not be so certain. I'll cover the DSM diagnosis criteria in another post, but, it's something to keep in mind at this point.

I would add these items to the list though, given our experience with co-morbid conditions.

a - Did the child have reflux or colic?
b - Does the child have eczema or asthma?
c - Does the child have a larger head than normal, or did they experience a period of rapid head size growth, even if the proportions are now correct?
d - Does the child have trouble sleeping?
e - Does the child have a history of gastrointestinal problems, whether diarrhea or constipation?
f - Does the child self-limit foods to just a few?
g - Has the child ever lost skills after mastering them (ie used to respond to name, but now doesn't, did have certain sounds or words and no longer uses them)?
h - Does the child seem to have lots of ear infections or other illnesses?

If your child has a few of the M-CHAT and more than a couple of my little supplemental list, you should take your concerns to your child's doctor immediately. If there is a problem, the earlier you intervene, the better the result.

How It All Started...

Our little guy was born early, but not early enough that he needed any form of intervention. He had an APGAR score of 9. He was (and of course, still is) beautiful.
He developed well, although suffered from reflux. Horrible reflux that I mentioned to his pediatrician on more than one occasion. Horrible reflux that his pediatrician assured us wasn't a problem.
He was slow to start finger foods. He would gain sounds (mama, dada) then lose them for a few months, then gain them back, then lose them. This is regression.
He pointed with his hand, not with an index finger. He didn't clap. As a non-native, I didn't know this is what they were talking about when asking if he 'played pattycake'. Why they couldn't call it clapping, I have no idea. So, we had some fine motor delays and some speech development regression. The reflux continued until he was one. It was also accompanied by progressively worsening bowel issues. He developed strabismus (wonky eyes) at the age of 6 months and we corrected with surgery at the age of 1.
At the age of one he started walking - right on time. A week later he progressed to running.
Then he became fascinated with doors - opening and closing them. He didn't care whether they were regular doors, automatic doors, large or small. He loved them all.
The bowel issues continued to get worse, he developed dark circles under his eyes, he started getting ear infections and croup regularly.
It seemed like we were at our pediatrician's office every other week.
By the age of 2 we'd seen enough, we were desperately worried. He had less than 5 words and those words were odd ones, like "twenty", "stethoscope" and "square". He also seemed to be exceptional at jigsaws, he could put together a 24 piece puzzle at 2 and instead of being able to label a few things by name (by pointing at them), he could name 100.
The developmental pediatrician we saw had no reservations in diagnosing him with classic autism at a moderate to severe level. We were devastated. We were also a little in denial as to the severity of our son's problem, but, either way, we figured we would take the diagnosis and the help that came with it. We also knew that, for our son, there had been developmental regression during his first 2 years of life. We knew he had medical issues and we were determined to treat everything we could in our aim to help him reach the potential we knew he had. And so began our journey.

Welcome To The Circus!

After years of people telling me to write a book about our experiences, I'm doing the online equivalent and starting a new blog.

A little about me -
- I'm almost 40 <shudder>.
- I'm originally from the UK but now live in Colorado.
- I've spent a lot of time at university collecting letters, but that seems like a very long time ago.
- I married a military guy and we are both counting down the days until his retirement.
- We have a little boy, who is amazing! He was also diagnosed with moderate/severe classic autism at the age of 2.

So, what's the point of this blog? It's mainly to record our experiences with autism and parenting.
I should probably add to this where I stand on the autism debate.

- I believe autism is biological.
- I believe it can be remediated with a combination approach.
- I think the cause of autism is likely genetic predetermination for specific biological mechanisms that are disrupted with environmental exposure.
- All children with autism are different. What has worked for us might not work for you.
- I believe in science and testing.
- I don't wear (or own) a tinfoil hat.

So, that covers some of the main points. I'm sure I will think of 500 other items as I go along, but, I will start by making a promise. I tell the truth about our experiences, good, bad or indifferent.

I can't promise all sunshine and roses, life simply isn't like that, although this blog will also not be a depression-filled whine. And with that, onward I say!