I am dialoging with a mom who suspects her son might be autistic, and I remember how lost I felt in the beginning. I thought since this is autism awareness month, it would be a good time to share some of my experience in “what to do next” from a non-professional parent.
Get really used to them. In most parts of the country the wait for a diagnosis is around a year. (our initial appointment was for 16 months out). There are month and years long wait lists for therapies. It stinks. The people who can diagnose autism include: Developmental Pediatricians, Developmental Psychologists, and some Neurologists. There are waitlists for the appointments, for therapies, for almost all services, and even doctors appointments because you often have to see specialists. (like pediatric dentists and ophthalmologists that are equip to deal with special needs kids instead of the regular doctors)
To reduce the wait time:
First, see if the practitioner has a practice at another location. They often have separate calendars and one calendar might have time a lot sooner than another. (it was a 6 month difference for us).
Second, get on the “call if you have a cancellation” list. Know early on that your key to getting anything is making friends with the person that answers the phones. Learn their names, use their names, be a sympathetic ear to them, but be really conscience of wasting their time because they are usually slammed. (that knocked another 5 months off the wait for us)
What to do while you wait for the appointment:
Find a friendly physician: Find a physician that is willing to order tests for you. Our pediatrician called the Developmental Ped we were going to see and asked what tests she wanted to see. That way our first appointment with the Developmental Ped was not spent ordering tests. The tests we had ordered were: a sedated hearing test (to get an accurate picture of his hearing; make sure that everything works physically, and to see if there was an auditory processing delay…for us, he has a slight delay from when he physically hears something and when it registers in his brain, but just this side of “normal”), a sedated MRI (to check for brain malformations and things that can explain the delays from a physical standpoint), blood draws for heavy metals (I know there was mercury and lead, but I think some others too), blood draws for genetic tests (to exclude Fragile X and some other genetic issues that mimic autism), a Celiacs screen, allergy tests, and a vision test.
In my Experience, if the Dr. is delayed-vax or non-vax friendly, there is a good chance they are more comfortable with autism and willing to order tests and work with you. I know it isn’t a hard and fast rule, but those drs seem more capable of thinking outside the box, flexible enough to be willing to learn more, and are just generally much better doctors in general. Run away fast from a dr. who is so stuck in their own ideas that they aren’t willing to listen and research new ideas.
There are also another whole set of tests that you can get from DAN (Defeat Autism Now) doctors, but they usually aren’t covered by insurance. They are working off of the theory that autism is caused by gut injury and include things like stool and hair samples, as well as some more blood tests. It is considered alternative medicine. A few of the tests can be done by mainstream medicine/labs, but a lot are only done through alternative labs and are controversial.
Start videotaping and documenting: Get videos of as many varied situations as possible to show the interactions. (playgroups, kids he knows, kids he doesn’t know, interactions with various ages and relationships, in large crowds, with music, doing bedtime stories, with therapists & teachers, excited, happy, tantrums, mad…everything you can think of) Start gathering clips of him through time too.
Doing the tests: I would highly recommend getting a prescription for Versed, or a similar “knock out” drug if you are needing to have your child sedated or blood drawn (ideally, have blood draws ordered for times when he is already being sedated so that you don’t have to do this more times). The versed makes most kids act really drunk and loopy, which made all the difference for us. Instead of screaming and having to be held down by multiple adults to do blood draws and put in the IVs for sedation (there was another kid in the ward and it was miserable to watch, had to be horrible to experience), he held his leapfrog game in one hand, giggling like crazy, while they drew blood and inserted an IV and he didn’t even seem to notice. The one time we went to the hospital and the doctor (different doctor) forgot to make this a part of his orders it was hell on earth because he was not handling the wait well and they couldn’t get the IV in. (heck, he wouldn’t stay on the gurney without me holding him and wrapping my legs around him) FINALLY, after a horrible experience, an OR dr. came over to us (after we were already down in the general OR ward with scary adult patients in the mix) and ordered the versed, which by that time was difficult to get him to take, but was miraculous once it was on board. Another thing that really makes a difference is getting your child a more private room. If the only set up is a ward situation, see if they have beds in a seperate area to minimize both your child’s stress and keep you from losing your mind keeping them away from the millions of buttons and wheels.
Start “The Notebook”: This isn’t actually necessary, but it REALLY helped me. Get a 3 ring binder. Make the first section a phone log (who you talked to, date, what you discussed) so it is right there when you finally get that call returned. Follow that section with the giant “all the phone numbers I will ever need to fill out paperwork” section. All the doctors (and addresses, phones, and fax numbers) your child has ever seen, all the therapists (add in start dates as you begin therapies), and as your child nears school age, the numbers of administrators of the school and the special ed people. You might also put a listing of “Special Ed attorneys” next to your special ed stuff, even if you haven’t actually contacted the attorney. That way you have it if you need it, and you have the option of “accidentally” leaving it open on that page as you are searching for something when dealing with problematic school employees.
You are also going to be asked your “social history” about a bajillion times (pregnancy details, milestones and such), so having that written down makes it a lot easier when you are handed a huge stack of paperwork. It is also good to keep any lists you need in the book – concerns, resources, wish lists, and the like, just so it is all in one place and easy to access.
Finally, put a bunch of page protectors in there, and every time you get an evaluation or report or IEP you can put it in there so that it is easy to access and photocopy. I try and keep the notebook updated with notations on when I have dr. appointments and comments about the appointments. If I am ticked off at a dr I make note of why, but keep him in my notebook so that I have that handy too if people ask about them. (I am likely to remember that I don’t like them, but not why…this helps me relay more accurate information of my experience).
Also, I include things like “good hairdressers” and other such service providers because other parents are often wanting that information. I eventually got a Palm to put all the info in so I didn’t have to refer to the notebook for everything, but the notebook is great for hauling with me to new practitioners because there isn’t a question that they can ask that I can’t answer and provide hard copies for.
Sadly, the notebook also helps with giving you peace of mind in the event that you ever have CPS called on you, a particular risk if you live in low income housing or apartments where you share walls with people (and your child will not sleep and screams a lot). It shouldn’t be this way, but having a SN child puts you at a much higher risk of having people call because they misinterpret what is happening. Being able to demonstrate, in one grab of a notebook, that you are managing the issues, will go a long way in demonstrating you are on top of the situation and pursuing care for your child.
First, if money is a concern (and it is with most of us), never assume the price is the actual price. ALWAYS ask if there is financial aid or scholarships available. The amount we would pay for therapy if we paid outright is $70K/year (actually, probably more by now because I figured that a while back), which is more than double what we make in a year. We are on financial aid at almost all of our therapies. (except one, which is mostly covered by insurance)
Second, you don’t need a diagnosis to access therapies. You just have to demonstrate a need. You can access free therapy through Early Intervention programs (in most states, that is if you are under 3yo) or the public school system (in most states, if you are over 3yo). The school system will only give you therapies that interfere with being educated (they are also supposed to provide therapy if it interferes with being able to interact with peers/social impairments or vocational impairments, but that can take some fighting for in real life) It shouldn’t be this way, but in real life, it can be hard to find quality therapists when you go through the public system…I have heard many stories of the parents knowing more about how to teach autistic kids than the people sent out to “help”, and getting what you actually need can be a struggle in futility because they just don’t exist some places, even though they are required by law.
Speech Therapy: With autism, the biggest push is to get speech therapy started. There are several different schools of therapy, but in some parts of the country (this being one) you can’t be picky because you are doing well just to get ANY therapy. Theoretically, you are supposed to get 40 hrs a week of ABA therapy. You can’t even get that here if you wanted to. ABA therapy is the only proven method of therapy that helps autism. However, IMO, that is largely because of how ABA is done. It is straight out of the behaviorist school of psychology, with specific measurable goals.
Other therapies are less specific, and less measurable, but target different aspects of autism. TEACCH is closely related to ABA and is used a lot in an educational model of therapy and in schools. Floortime and Relationship Development Intervention are some of the therapies you can start on your own, as a parent. If you can get a therapist, that is really spectacular, but for those of us with few options, those two closely related therapies are the best bet when you have to go at it on your own. (in some cases, I think it is superior, but less measurable, to ABA and other more formal therapies)
Occupational Therapy: Honestly, although I had a hard time understanding exactly what Occupational Therapy was doing for a while, and almost said “no thanks” to it in the beginning. I discovered, over time, that it is just as important as speech therapy for language development, and more important for him to feel good inside his skin and cope with the world. We have to incorporate a lot of OT in his ST to get the best results in ST. Sensory issues are really a huge deal. A lot of things that outsiders see as “bad behavior” are nothing more than an autistic child seeking (or avoiding) sensory input. OT is one of those things that is probably the most difficult to really understand, but the easiest to carry over into the home. (warning: stereotyping ahead, please understand this is a generalization) Dads are particularly good at helping with OT things because so many of the activities that really help kids are the roughhousing that Dads are so good at, and all the things your mom told you not to do…jumping off of things, swinging around, making a mess, wrestling around.
Physical Therapy: not as common for autistic kids, but still present. There is a lot of crossover between physical therapy and OT, and since OT encompasses more things relevant to many with autism, that is who usually handles the things that border on PT for a lot of kids. Zane, for instance, is on the low end of normal for muscle tone. If he falls out of the range of normal, he will qualify for PT, but he isn’t quite there now and the issues are dealt with in OT.
Other activity based therapies: Horse riding (hippotherapy), music therapy, art therapy, water therapy, gymnastics, and martial arts are all really good for autistic kids. Most of these can be successful to a degree with just lessons (music, art, swimming, gymnastic, martial arts), but are greatly improved if you can find a therapist. Horse riding is an exception simply because horses are powerful animals and you can really get hurt if things go south. You want an experienced team that includes an OT, ST and/or PT on the team so that they really get the most out of it. (it isn’t ”just” riding, it is doing activities that you would usually do on the ground, but on horses, including standing, crossing the midline in activities, and moving in a way you don’t traditionally move on horses) Gymnastics & swimming is a close second in being cautious because there are inherent dangers in those activities.
You want to find somebody who has great instincts, and preferably some experience (and very small class sizes or a willingness to allow the parent to participate) to prevent injuries and accidents. Music therapy can be one of the most important therapies because music reaches a lot of autistic kids, even when nothing else will. Music lessons with an intuitive teacher can be great, but often a therapist can really get a lot more targeted (not just playing the notes, but using the music in a therapeutic way) for kids. (That is the therapy that I really want to get, but haven’t found the right person yet). Art therapy is much like music therapy, valuable just as lessons, but enhanced greatly by a professional.
Other diet and supplement based therapies: First, make sure you do your research before pursing diet, supplement and other “natural” therapies. Autism won’t kill your child, but some of the therapies can. (particularly some of the chelating processes). Some doctors are better than others and there have been cases of kids dying under the care of physicians, so don’t just rely on a doctor blindly…educate yourself.
Another consideration with diets is that some kids with autism WILL starve themselves before eating a food they don’t want. With typically developing kids, the hunger will eventually drive them to eat, but that isn’t true for some autistic kiddos.
I will write another time on the diets and supplement approaches, but the quick list is: Enzyme therapy, Gluten Free / Casein Free (which often leads to more food allergies and you have to eliminate soy and corn and sometimes more), Specific Carbohydrate Diet, B vitamin, Omega vitamins, and a variety of other supplements. Autism is usually not treated with mainstream prescriptions, although some co-existing conditions can be, especially in older kids. (like anxiety, OCD, and depression)
Reach out to other parents
In all honesty, other parents are, by far, the best resources. Local parents are the best resources if you can find them. Look at yahoo and meetup.com to see if there are groups in the area. If there isn’t one, start it. One was started in our area around December and has grown to 46 families in just a few months. Just set up a meeting time once a month at a local restaurant and people will gather. Parents are hungry for companionship and ready to share resources they have to gain resources they want. In the short time that our group has been in place, there is a lot more communication about what is working, what isn’t, and I know that there have been a LOT of connections made for people. People IRL are the best resource you can get. Everything from finding childcare, to hairdressers, to accepting churches, to people who make custom items (like weighted blankets or specialty clothing), to online sites that have helped. Getting the group together means you are not at the mercy of the service providers or the school system as much because you know what else is out there. There is power in numbers.
Online resources are also very helpful because you can ask anything…from weird poops to handling specific behaviors…all the things that are hard to talk about because it is hard to find people in the same situation. It is also a great thing when you are feeling isolated and alone (common issue) because you just can’t get out in the community like you want to.
Books to get at the beginning (the very short list)
Ten things every autistic child wishes you knew. Easy reading and short. Also a great book to give to grandparents and caregivers.
Engaging Autism. The Floortime model of therapy. Explains a lot, and gives you some ideas to get started with at home.
Out of Sync Child Has Fun. Packed full of ideas you can implement to help with sensory issues. This is the follow up to Out of Sync Child. The first book is to help a person recognize sensory issues and Sensory Integration Disorder. (a good book, but if you can only get one, the second one is more practical.)
If you are interested in diet and supplement therapies, I would recommend starting with Enzymes: Go with your Gut and Healing the New Childhood Epidemics. If you want to do diets, Special Diets for Special Kids is the book I see recommended the most.
Once you have absorbed those and it doesn’t seem as overwhelming, there are an enormous amount of books to look at. Look at the publication dates to see how up to date the information is, because the field has exploded in the last decade. There are two different types of books…books about autism or treatments for autism (sort of along the lines of textbooks or how-to books) and memoirs (usually by parents raising autistic kids, but there are a few notable Autistic adult authors…Temple Grandin, PhD is one of them). My rule of thumb is that if describes autism in negative terms, I put it down. I don’t need that crap in my brain.