I remember when I was given the diagnosis by my pediatrician....that my beautiful baby boy was Autistic. I was given a phone number. ONE phone number with the diagnosis. It was to Northern Utah Autism. From that phone number, I got a few more. But I never got any information, really, on what to do. Specifically, what treatment options were there, were they proven effective, how do you get treatment, where do you get treatment? These were all questions I needed answers to that no one was able to give me. Because, "ALL AUTISTIC CHILDREN ARE DIFFERENT". I was given that response all the time. And it's true, however, it didn't help me, as a parent, find treatment for my child. So if you are a parent of a newly diagnosed Autistic child, I am going to give you the information you need to 1- find treatment options for your child, 2- find services for your child, 3- find others in your area who can help you navigate the "system(s)" that you will deal with for the rest of your child's life.
Once you receive the diagnosis, your treatment options:
1. Get an appointment with a neurologist.
Why a neurologist? Because you'll want to rule out any physiological conditions contributing to, or possibly causing the Autistic-like symptoms. Get your primary care physician to help you get the appointment as many insurances require referrals and, the wait times for these specialists can be extremely lengthy.
2. Get an appointment with an ENT (Ear, Nose, and Throat doctor).
Why an ENT? Many Autistic children suffer with hearing problems and since eye contact is a problem, many Autistic children are initially thought to be deaf. In my children's cases, my son was initially thought to be deaf and both children had chronic ear infections and tubes throughout their early childhood. Autistic children are sensitive to light, sound, and touches. Knowing whether they are hearing or not, or how sensitive they are to sound, will help you navigate those social difficulties of going to restaurants, ball games, family gatherings and anywhere there's lots of noise and people.
3. Contact your school district.
If your child is under 3 years of age, there is a program called "Early Intervention." They will get you set up with services like speech, occupational therapy, and other therapists/therapies they have available. The mistake I made here was assuming my school district had all the answers for me. That they had what would help my son the most. Don't get me wrong, they were terrific people, every single one of them are still God's angels to me, but, you cannot stop there -especially if you have a non-verbal child- you need to do more. If your child is over the age of 3, then they are a part of the school district. You will be introduced to IEP's, or Individual Educational Plans which outline the services the district will provide your child. Before you attend one of these IEP meetings, please read my section on school district services below.
4. Look for an ABA therapist in your area. I wish I had done this earlier for my non-verbal son. Even though he is making incredible gains with therapy, I have major guilt over not having done it when he was 2. See what your insurance can cover, if they do at all, see if your therapist can help you with a payment plan or schedule if insurance can't cover it, and if those options are exhausted, you will need to start looking for private grants and funding. Another option, and far less expensive than private therapy, is to do ABA therapy yourself. Visit Rethink Autism for more information on do-it-yourself ABA therapy.
5. Look into a therapy called "The Play Project". They have several chapters throughout the country. This therapy engages the child by following his cues to create circles of communication. You begin with a simple look, and you build on that eye contact. It worked really well for my son. He learned to like engaging with people. I credit much of his current awareness with that early intervention.
6. I would read all the literature about gluten free and caseine free diets and decide if you want to pursue those routes. These are not cure-alls as a lot of people bill them but worth checking out and experimenting with. Leave no stone unturned!
Finding services for your child:
1. School district.
As stated above, they are one of the first organizations you need to contact. They will set up an IEP (Individualized Educational Plan) meeting (for children 3 and older). Prior to attending this meeting, I recommend you be well informed and prepared. Have a treatment plan ready to go. This could be a letter, or document by your pediatrician, psychiatrist, neurologist, or another expert in the field. It will give you a starting point to make sure your child gets adequate services because all school districts are strapped for cash and THEY WILL DO AS LITTLE AS POSSIBLE! Read this website written by a father of an autistic child. It is VERY HELPFUL. Basically, he suggests getting an attorney and/or advocate to come with you to all the IEP meetings and getting a treatment plan together by medical professionals BEFORE you go to your FIRST IEP meeting. The medical/professional treatment plan gives you and the educators a standard to go by. If the district says they can't do something the professionals say you need, you point to your evaluations and say, "that is not adequate. This is adequate." If you need somewhere to start analyzing your Autistic child's study habits and classroom needs, (not necessarily educational or therapeutic needs and/or requirements) look here. They have workbooks that are to be filled out by the student and a workbook for the teacher to analyze the student's responses. This way they can employ strategies that will cater to that child's specific functioning (in the classroom) needs.
Note: Navigating the school districts can be extremely frustrating and discouraging. Especially after hearing horror story after horror story. I understand that you can get more accomplished by involving lawyers and advocates-people you hire who know the law and can remind the district of your child's rights to an appropriate education. Being a single mother of 2 ASD children, I cannot afford a lawyer nor an advocate. I felt the money better spent on private therapy and left the district altogether. I do know a lot of parents, though, who educate themselves and force the district's hand by sheer will, spitfire and determination. I'm sure I will have to go that route as well at some point. Unfortunately, I don't have the luxury of time at the moment since my son's developmental window closes soon.
2. State services.
For the state of Utah, this is "Children with Special Health Care Needs" but every state has this department. Contact them to make an appointment so your child can be seen by one of the psychologists. They can make recommendations and assist you in getting state aid for your child. This can be done in the form of Social Security, or SSI, depending on how severely Autistic your child is. There are also voucher programs to help you fill your car if you are driving great distances for therapy. (I'm still trying to find out about this one but I know people who have done it. I will blog about it later if I can find out more.)
3. Church services.
This may sound odd to some, but there are churches out there who have people who specialize in helping their members get assistance with their children with special needs. They are also a good source of emotional support and well-being for parents and families of special needs children. It's another resource. I thought I would mention it.
Finding others to help you navigate the system(s):
1. National and local organizations.
Use the internet to find the national organizations and their local chapters. Places like Autism Speaks, Autism Society, Families for Early Autism Treatment (FEAT), - the link provided takes you to the wa site. Check to see if this organization is in your state- and you can check this website to a list of many more...http://www.autismawarenessonline.com/national.htm
2. Social Networking sites.
The two social networking sites I currently have the most contacts on are Facebook and My Autism Team. They link you with other parents who are going through the same daily struggles you are. It helps your morale when you know you're not alone. It also links you with other people who can give you further insight into services, your child's behavior, and different treatment options that have worked for them and, it's also a place to vent where others will understand.
I hope I have provided enough information to help someone out there get help for their child. At least it's somewhere to start. I wish I would have known some of these things sooner. Oh well, live, learn, and more importantly, share!
