So your child was just diagnosed with autism...

It just happened and the news hits you like a runaway truck. You experience a mixture of relief and shock. Relief at having a name for the thing you didn't understand and shock because you still have no idea what to do about it. Better yet, your doctor may not know what you should do either. It's bad enough that parenting doesn't come with automatic instructions, but you have far more to learn than the average parent.

Well you aren't alone and this write up is geared to give you more than one place to start.

I am an adult with autism raising a teenager with autism. I've been on your path and then some. Not only did I have to relearn everything I thought I knew about parenting, I had to relearn myself. This advice will by no means cover every thing you could face. Every child is different and how heavily they are affected by autism is vastly different. That's why it's called "the spectrum". Which leads to my first point:

Get to know your child: Sure, every parent has to do this, but you are watching for intricate details that others will take for granted. You are watching for triggers in sensory that others don't commonly react to. You are watching for extreme behaviors that demonstrate super interest or reaction or almost NO interest or reaction. These will be noteworthy to you so you can help your child interact with a loud and intense world. Look for both the things that aggravate and provide comfort. For example, if hiding under a blanket calms a meltdown, you best have a blanket with you on outings. There are three subjects that I use to teach people about autism in children. They are as follows:

-Sensory: Various sensory (your five senses) "problems" or imbalances are common in autism. Colors and lights may be super bright and overbearing. Sounds may be too loud and invasive. Textures may cause extreme discomfort. Yet, some sensory issues may do the opposite so much that your child seeks them out constantly. These can be very strange behaviors. The list is long and some behaviors can be disturbing. The good news is that your child will develop past hundreds of these behaviors. Behaviors as a toddler are by no means bound to be permanent. And by no means should you think you cannot teach your child alternate behaviors. You absolutely can.

-Routine: The order in which you do daily activities is something your child will likely become very sensitive of. Changes in routines may be met with severe resistance. This includes issues like change of wardrobe from one season to the next. As they grow, clear information on how and why of changes may help. Again, these are teaching points for you as the parent. It's simply something you will have long term work on with your child. The forms of many sensitivities will change with age. Just know, that if you teach them to brush their teeth before getting dressed and one day you switch that around, it may become a very difficult day.

-Social: Social interactions are heavily affected by sensory and some delayed maturity issues (but not just those). Social interactions have a tendency to go one of two directions; too little or way too much. Lack of eye contact or "appropriate" response to your emotions (anger or praise) are just the beginning. Clear and literal information can be of utmost importance. For example, my wife summoned my son to his messy bedroom where he had tossed dirty clothes down in his doorway. She asked him "what is wrong with this picture?". My son became very nervous because, while he saw the mess on his floor, he did not see a "picture" anywhere. If she had asked "what is wrong with these clothes?" he would have understood immediately. You're child will have to be taught very specifically what it means when you are happy with him or not. Just expressing the emotions, will likely not work the same as with a typical child. As an additional caution, never spank an autistic child. It will ignite sensory triggers, cause huge meltdowns, and teach them that it's okay to hit you and others. When I say that you will have to learn a whole different way of parenting it is not a casual reflection.

Be involved with your child: Your child needs you more than ever to help them understand how to live in our crazy world. I'm going to make a suggestion that has helped my own son in so many ways.

Play games.

Yes, games. I play and collect heroclix with my son. It's a table top game with tiny figurines of comic book super heroes played out on a map. I developed short term variations of the rules for my son to enjoy at a very young age (about 8). It helped him with social interaction, math, and problem solving. He still loves the game to this day. He has fond memories of interactions with those games. How to react to winning or losing and the random chances of the dice are incredible tools that can be integrated into teaching how the world works in real life. It's creative parenting at its best.

Finally, let me tell you that (while you are understandably shaken now) you have become the parent of a very special form of person. He or she is going to show you things about life you never thought possible. Get ready, because it's going to be quite a trip.

Your Doctor and the DSM

Today I found this article about more on the controversy over changes in the DSM, the diagnostic manual supposed to aid in diagnosing "mental illness". What the article suggests, I find very interesting. It suggests that most doctors don't like the DSM in the first place. Check it out HERE.

After reading this I can understand why. Mental disorders are not something you can fit into a distinct mold. They all have variations and degrees of effect and many are mixed in the people that have them. For example, it's possible to have Asperger's and Bipolar disorder at the same time. How do you distinguish them? That is what your doctor is supposed to be for. There are long trusted tests that can be administered and very long questionnaires that can help decipher. Specialists have been using these for years.

This further supports my belief that the key is not the DSM, rather your doctor. Your doctor has the final say and write the proper insurance codes to get you the support (meds, etc.) you need. No matter what they write in that DSM, the DSM is not your doctor.

Since the recent suggested changes, I've seen people worried about losing their diagnosis or having their diagnosis messed up in general. I literally have had people say to me that they need to worry about avoiding re-diagnosis. Well, here's the thing, don't accept it. You know your child better than anyone, you've researched the condition in and out (I hope) and have a good rapport with your doctor (I hope) and you can stick with what you know. The reality of your conditions or your child's conditions don't change just because a book says so. Talk to your doctor about your worries and that you want to make sure your child gets the support they need.

DSM V: A real look

Lately the internet is a buzz with all sorts of chaos about the proposals for the new DSM (V) set for 2013. Petitions are flying, people are screaming and panicking...... STOP. Please stop. And please read this through so I can help you better understand. Your benefits, diagnosis, treatments, supports and what ever else are not being taken away. You are not going to lose your identity or anything else. Lets walk through it, shall we?

Primary complaint is that they are removing Asperger's and Rhett's syndrome from diagnosis in the DSM V. But hold on, that already happened. Yes, it already happened. DSM IV lists the new compound definition as Autistic Disorder. Read it HERE. Click on the tab that says DSM IV and read it.

What does this mean? It means that you either have autism or you don't, period. If you were diagnosed with Asperger's, then you have autism. If you were diagnosed with Rhett's, you have autism. It is not intended to take anyone's diagnosis away. It doesn't change your diagnosis except for the sake of a word.

Why did they do this? The biggest reason is that autism is already really hard to tie down in a category like when they had five forms listed before. It was hard to diagnose and still is. Having all the varied categories actually created more confusion than they were worth. Consider this:

Right now there are still several states where insurance will not cover treatments for "Asperger's" but they will for "Autism". Think about it. The new definition in the DSM means you are actually more likely to get the treatments and support you need because of insurance companies needs for specific terminologies.

Here is a quote from that same link under the tab of "rationale":

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

Be sure to read the tab for the DSM V. You will notice that nowhere does it say that you are not autistic if you were previously diagnosed under one of the five previous forms of autism. All that is happening is a change of terminology, nothing else. 

Asperger's and Rhett's have not ceased to exist, they are simply consider as "Autism". That is all. I hope that people can calm themselves soon and see this before they cause themselves a lot of unnecessary stress. 

The tests for autism (by name)

What are the tests used to diagnosis and evaluate autism? I have five tests to tell you about that are used for exactly that. I may do you well to ask about them by name. If your child's school has their own diagnosis team, ask them if they use these tests. If they don't you should ask what kind of criteria they follow and get to know it. Click on the abbreviation to learn more about the test at wikipedia.

ADOS (Autism Diagnostic Observation Schedule): Quote from wikipedia: The ADOS generally takes from 30 to 60 minutes to administer. During this time the examiner provides a series of opportunities for the subject to show social and communication behaviors relevant to the diagnosis of autism.[2] Each subject is administered activities from just one of the four modules. The selection of an appropriate module is based on the developmental and language level of the referred individual. The only developmental level not served by the ADOS is that for adolescents and adults who are nonverbal.[1] A revision, the ADOS-2, is currently in development with a release goal date in early 2011. It will include improved algorithms for Modules 1 to 3 and a new Toddler Module that facilitates assessment in children ages 12 to 20 months.

ADIR (Autism Diagnosis Interview Revised): This long interview requires friends and family of the patient to answer questions about the patient in order to determine a diagnosis. It is often used hand in hand with other tests like the ADOS. I've heard it called the world's longest questionnaire.

CARS (Childhood Autism Rating Scale): Specifically for children, it's not unheard of that school diagnosis teams may use this. Be sure to look at the list of criteria in the link.

ASDS (Asperger's Syndrome Diagnosis Scale): Wikidpedia didn't actually have this one so I had to find a link elsewhere. This test may be a little out of date now since all the forms of autism have been lumped for purpose of diagnosis. Still, you may find the information interesting if not useful.

GAF (Global Assessment of Functioning): The purpose of this test is to see how well you function with your symptoms and if symptoms show themselves or how much they show themselves. My own score was a 45. That puts me in the severe bracket. I can do most of my household things, but burn out quickly and have to rest more than most people do. By the way, as you read the level descriptions, know that there is no frequent shop lifting here (I say with a grin)! This test is also used in determining disability.

So there you have five official and professionally recognized and used tests. Hopefully this gives you a touch more information to use at your fingertips.

Autism: Why get diagnosis?

You aren't having any difficulties and it's been suggested that you may be on the spectrum. Or maybe that's the story for your child? Either way, why bother with diagnosis if you aren't having any difficulties?

Getting a diagnosis isn't always about having difficulties today. It's preparing for difficulties in the future. Few of us have the luxury of a crystal ball and feeling confident about your future and standing in life is all well and good. Unfortunately, life is just not so certain.

Even if you never make use of a diagnosis in your medical records, it gives you something to fall back on. New developments are cropping up every year in services and benefits that you may be eligible for if you need them. Getting proper diagnosis opens those doors for you. If you never need them, good for you, but you should be prepared ahead of time.

Early diagnosis is especially important for our children. Sure, they may not be having difficulties now, but as they get older and life cycles change, they may need the additional supports that are available to children on the spectrum. Studies have shown that early support is more successful than waiting until later. You can find such reports in most medical diagnosis for all kinds of conditions.

I've talked to lots of parents who have fallen into the dismissive "it's just" trap. They don't bother getting diagnosis, despite warnings, because they deny or dismiss the problem. "Oh, Joey's just acting out". That's a dangerous attitude and I've seen the results first hand. I've been approached by parents who find themselves in a desperate situation after years of dismissal. They often say something to me like, "we thought it was..." and then they got surprised when the problem didn't just go away.

Autism doesn't just go away. It's a permanent condition but not the end of the world. It is treatable and controllable in various levels. The early you get the support that's needed, the better (even if you don't have to use it right away). If you don't go and find out what support or treatment is available, get diagnosis, learn about it, you'll only have yourself to blame.