Friday, September 2, 2011

HELP! I think my son has Autism, where do I start?

Its sad to say that is a common email or call that I get and always I am happy to help. I would like to take this blog post and turn it into a little mini resource guide for all my friends and friends of friends who have contacted me recently. I fear I have not been able to dedicate as much time as I would like to every response and with these links, I should at least be able to catch up on giving these friends some of the info I have promised. 

First of all, relax, take a deep breath. The common thread I get in email is a sense of panic, very understandable panic. It was in panic 8 years ago that I found myself carting Cameron to preschool 5 days a week, speech 3 days a week, occupational therapy 2 days a week, visiting with the developmental pediatrician once a month (an hour away), making plans to contact a list of neurologists and specialists and buried beneath a stack of Autism books 20 high on my nightstand (and in the bathroom, in my car, my purse, my staircase, my ottoman and oddly enough once in my freezer). Every single person who has contacted me is a very dedicated, level headed and intelligent Mom and I know they will do what is needed eventually, but (please hear this) you don't have to do it ALL RIGHT NOW. 

PRE-DIAGNOSIS- You are worried that something *may* be wrong. Okay, don't fight your mommy gut but also don't jump to "worse case scenario" (Autism). There are many reasons why a child may act they way he/she does and if you are worried please see below:

Talk to you pediatrician. This is the doctor who has the most time with your child, he/she has been watching them grown from infancy to now so they are always a good first contact. The word of your Ped is not the final answer though, I will caution you in that. I was worried about Cameron at his 1 year visit and was completely blown off by our pediatrician. I found a new one and don't regret that decision one second. The ped cannot give you a full diagnosis but they can point you in the right direction for your local area. They've seen this before and will have a host of referrals for you. This may sound like a step you can skip but I think it is an important one because of the referrals, keeping everyone on the same page, having him prepared for any blood work you might have to request and you probably already have an appointment set up anyway since this is the doctor your child sees the most often. Specialists can take 6-8 months to schedule, you can usually see your primary doctor within a month. Use the resource.

Check out the signs of Autism. DO NOT GOOGLE 'AUTISM'!!! I cannot stress this enough, Google will give you some truly horrible sites, please wait to overwhelm yourself with that later on when you can more easily filter out the fact from the crap. Answering no to all of these does not mean your child doesn't have Autism, if you are still concerned contact someone to do an evaluation. Answering yes to all of these also does not mean your child has Autism. It means your child has some symptoms of Autism, a formal evaluation is necessary to determine actual diagnosis. The test most commonly used is the ADOS and is a play based test for very young children and is more visual and question based as the child gets older.
These are the signs of Autism:

  • No big smiles or other warm, joyful expressions by six months or thereafter

  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter

  • No babbling by 12 months

  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months

  • No words by 16 months

  • No two-word meaningful phrases (without imitating or repeating) by 24 months

  • Any loss of speech or babbling or social skills at any age

  • Contact a State Agency. I think every state has an early intervention resource, in Maryland it is called Infants and Toddlers. ANYONE can contact them for an evaluation, for any concern. Initially I called them for a speech concern and then we went forward with the Autism Evaluation once it became apparent that the speech delay had a cause. Once your child is school age, schools have resources to do evaluations as well. In Maryland it is called Child Find. I, personally, don't put 100% faith in the evaluations done by state agencies but it is a good step in the right direction. As before, you will get able to get in to see them within a short time frame (I think they have to contact you and meet with you within a month-- I will verify that though), a specialist will take far longer. Go ahead an contact both at the same time if you wish.

    Consult a specialist for diagnosis/treatment. Typically you start with a Developmental Pediatrician who can give a full evaluation. Additionally you might be able to contact a Neuropsychologist (with a diagnosis, you'll probably meet one anyway). A Speech Language Pathologist might be able to do an evaluation depending on the scope of their education. A Pediatric Psychologist might also be able to do an eval as well. 

    I will tell you that our trip on the Autism Highway looks like this:
    1. Pediatrician (blown off, waited 6 months)
    2. Infants & Todders (Speech Eval)
    3. New Pediatrician (who wanted to know why we hadn't already called I&T, we already had)
    4. Diagnosis by Psychologist at I&T (given state funded Speech, OT and Classroom instruction)
    5. Additional Speech Therapy (private)
    6. Second opinion by Developmental Pediatrician (private)
    7. Additional OT (private)
    8. Third opinion by Developmental Pediatrician (private- highly regarded doctor at the Center for Autism and Related Disorders at Kennedy Kreiger who was an ass but gave us good information). 
    9. Child Find (the school had to accept his diagnosis)
    10. Special Education PreSchool
    11. Behavioral Psychologist (private)
    12. Special Program with Inclusive opportunities on grade level class room.  
    13. Psychiatrist (medication trials)
    So far so good... I'm sure I am leaving something out though. I want to follow this up very very shortly with another blog post, "Great, now we have a diagnosis, NOW what do I do?" In the interim... here are some links for Pre-Diagnosis AND Post-Diagnosis that may be helpful. 

    The Signs of Autism- Autism Speaks

    Developmental Milestone by Age- Autism Speaks

    Aspergers- Autism Speaks

    An AWESOME downloadable 100 day kit, what to do once you have a diagnosis- Autism Speaks

    Aspergers Kit downloadable- Autism Speaks

    What is the ADOS- Wikipedia

    Maryland Infants and Toddlers Program- Maryland Department of Education

    Maryland Infants and Toddlers Contact list by county- Autism Connect MD

    Maryland Child Find Contact List-Maryland Dept of Ed.

    C.A.R.D (Center for Autism and Related Disorders)- Kennedy Krieger Institute

    I will put a resource list on the Rantings Facebook page and will add to it periodically. In the interim, keep sending me your questions... I'll either answer them personally or I'll put them in a blog post. A LOT of people have the same questions and I am happy to answer them all. Hang in there, we're all in this together!

    1 comment:

    1. Maggie you have been a priceless help and a rock for me - I hope I can 'pass it on' to other warrior mamas. Thanks for this post, and thank you for all the ways you've lit this path for me and Grant by extension. <3