I can't begin to tell you how frustrating it is to learn your child has autism and then have to navigate the world alone to find the appropriate help. A lot of the information I've gathered throughout the years have come from mothers and therapists.
Right around my son's first birthday, I learned through the mommy grapevine that there was something called a feeding therapist. It was at that point I noticed my son wasn't eating properly and was chronically constipated. I had applied for a feeding therapist through early intervention (some school districts offer this service between birth and 3 years of age) only to get denied. The excuse: my son was physically thriving on the scale and that without a note from the doctor saying he is malnourished, I would have to wait till 18 months before I could re-apply for early intervention and receive services through another avenue, perhaps a speech delay. And if he was eligible for speech and was still displaying poor feeding, I would be able to get a speech and feeding therapist in one. And so I did as I was told. And ultimately received the speech and feeding therapist through early intervention.
So for about a year and a half he received speech and feeding through early intervention, but the improvements were not nearly enough. Which made me more suspicious about my son's delays. I kept asking the speech and feeding therapist if she thought he had autism (which she legally is not allowed to hint at nor diagnose), and after seeing my pain and suffering, she finally told me to go online and take a preliminary questionnaire which would tell me if he was at risk. She also reiterated that "Autism is just a label to get help. A lot of people get the label and have it removed years later when their child is mainstreamed." So she imbedded both the idea of hope and practicality in my soul. And I am forever grateful for her honesty and directness. Also, after pressing my service coordinator provided in early intervention, I was told that a diagnosis will get me up to 20 hour a week of one-on-one therapy at home instead of just 2 hours a week. Or better yet, if my child was born early enough in the calendar year, he could have gone straight to a center-based school which has kids on the spectrum, kids with just general global delays, neuro-typical kids (See to Tell or Not to Tell), and most importantly, special ed teachers and therapists. And the last person to steer me in the right direction was a dear friend who I inadvertently cornered. She told me that her son received a diagnosis in very early childhood (I had zero suspicion..just thought he had minor delays in language) only to have it removed a year later. Either it was the wrong call, or the intervention helped tremendously. She told me that a lot of the diagnosis came from her reports of his behavior, not just the psychologist's evaluation provided by early intervention. So I learned through these three people that a diagnosis doesn't just come out of no where, but comes when you, as a parent, chases it (unless the symptoms are very severe and a pediatrician catches it right away). Also, remember that pediatricians are not seeing the full picture in a ten minute doctor's visit. It is your job to press them for information and they will let you know about all the programs offered in your district. They can guide you through the right path to receive a diagnosis (from either a developmental pediatrician, a neurologist, or a psychologist) and let you know more about services available.
So moving forward, once you've received a diagnosis and your brain starts racing about the future, just knowing about all the services that are available through life can help ease your anxieties. Below I've mentioned the ones I've learned about in the past six years of this journey:
1) OPWDD (Office for People With Developmental Disabilities): This is government aid provided in the case of moderate to severe disability for as long as you should need it. So far, I sent my application but am still waiting for a response (which takes a long time to receive). The sooner you get the ball rolling on applying, the higher your chance is to receive help as your child may outgrow symptoms and not be eligible for aid in the future. If you have medicaid, you will have access to more services for your child. Regardless, all children receive medicaid once they are 18 years old (from what I understand). For those without medicaid coverage, no need to worry, they still offer reimbursement programs up to $1000/year for say karate classes, swim lessons, art classes, and other programs (not speech, ot or pt though). Remember to keep your receipts! You also will qualify for in-home respite, which is basically a babysitter through an agency’s staff or someone you hire and put on their payroll. Which is a great perk because some agencies allow you to list family members as employees who are already familiar with your child and that you trust. For every agency, this works differently. You will receive a list of agencies to call and ask all the questions you need. You can also get school break respite which means you can send your child to like a one week camp mid year, and also some agencies have summer camps (some even overnight). The list of services provided is endless. And for all special needs children and adults, not strictly for autism. All developmental delays are included! And also, you can rest easy because once your child turns 18, he/she is eligible for so much more services (think housing, employment, etc.). So whenever you’re feeling nervous or down, just remember what this wonderful country offers its citizens!
2) ABA services: This is the therapy offered to children with behavioral issues and autism. It is the only thing medically proven to help children on the spectrum. It stands for Applied Behavioral Analysis and is offered through personal health insurance (google any ABA agency in your area and then call them to ask them whether they accept your insurance). Depending on your plan, you can get up to 20 hours a week of one-on-one ABA therapy at your home after your child's school day (which is only offered by district until your child is 3 years old....so then you'll have to transition to Health Insurance to continue receiving at home services). I have to be honest. In the beginning, I was very nervous about the idea of always having someone in my home. It kind of robs me of my freedom to be stuck in the house at all times during therapy. But I soon found it liberating and non-intrusive. The therapists camouflage into my household. It's as if they are part of the family. My initial aversion turned into complete acceptance.
3) Early Intervention, CPSE, CSE: In my district, these are the programs that offer therapy through the district as mentioned above So far, I am familiar with Early Intervention (birth to 3 years old), CPSE (3 to 5 years old), and CSE (elementary school). Each are run by different coordinators and a psychological evaluation can be performed for free at any point you request in any one of these three phases, as long as it's performed only once within the time allotted. If you have any further questions, feel free to email me.
4) IEP, Self Contained Classes, Center Based Schools, Integrated Classes: IEPS are Individualized Education Programs designed particular for your special needs child or delayed child. This is something that you will change every year of your child's life and is a personalized blueprint for his/her teachers and therapists to follow through the school year and sometimes the summer. Self Contained Classes are classes which only contain children with delays or diagnoses. Center Based Schools, as I mentioned briefly above, are preschools (and perhaps elementary schools) that are privately run but paid for by district that are specialized for children with global delays and children with disabilities as well as typical children. These schools are so good that some parents pay a premium for their typical children to attend as the teachers are all specially trained. Integrated classes are offered in both Center Based Programs and public schools. They are classes that contain both regular ed students and high functioning special ed students. The regular ed students serve as a models for those kids who fall slightly behind academically or behaviorally. Never ever let the size of the class discourage you. Think of it as a win win situation. If your child ends up being in a class with only 6 students, 1 teacher, and 3 assistants, he/she is getting the best of the best services and the most attention...which will yield the best results. Even if your child is moved around from one class size to another throughout the years, don't ever let this be a measure of your child's future success. Just accept it and be as grateful as you can be! Otherwise, you'll just unnecessarily torture yourself! Thank G-d you don't live in a third world country and take advantage of every resource!
5) SSI (Supplemental Security Income): I was contacted by my health insurance about this particular perk. Depending on you annual income, your special needs child may be eligible for a monthly salary from the government to cover his/her present and future needs. If your income is low enough, you will most certainly be able to receive money to aid your child in any way you choose.
6) Speech, Special Ed, OT, PT, Feeding and so on: These are all the therapies offered that I know of. Special Ed is when your child is in a regular ed class and has someone who comes in about an hour a day to guide your child. OT stands for Occupational Therapy which works on fine motor skills (I've been told this is a key therapy for children on the spectrum and doesn't get enough credit for it's value). PT stands for Physical Therapy for a child who has low muscle tone and poor coordination. Feeding is when your child has problems eating (there are even some schools which just focus on this particular struggle...ask your pediatricians or any therapist you know for more information).
I'm sure there are many more services I am missing. I am only six years into this world. My knowledge is limited. And not entirely accurate. This is all from my personal experience. In other states and counties, services may be entirely different than they are in New York and Nassau county (which I've been told are among the best). Remember to always question whoever you can because, as I've learned the hard way, everyone has a little piece of the puzzle! Feel free to email me any question or concern. Your information will remain completely confidential. You can make an anonymous account as well. I am pleased to help in any way I can...as certain mothers have for me in times of need! We'd all be no where without each other as a resource! I thank every mother who has fought for these services we so easily receive today. Without their lonely struggle at a time when autism wasn't so prevalent in the general population, we would be no where! I thank them from the very bottom of my heart for laying the bricks for the rest of us!!!