My Child Was Diagnosed With Autism Now What?
Whether it’s age 4 or 14, receiving an autism diagnosis for your child can be overwhelming. Most people who don’t have first hand experience with autism only know what they’ve heard from others, the movies and TV, which is often wrong or grossly exaggerated yet usually understated at the same time! Even if you strongly suspected that your son or daughter had autism, the actual diagnosis typically leaves parents stunned.
In this article we’ll discuss…
- What help you can get as an autism parent.
- Learning more as an autism parent
- Devising a support system
- Autism and school
- Autism therapy
By the end of this article, I hope I will have given you enough information to inspire you to share it with others!
The First Step Will Surprise You
You find yourself sitting there saying, my child was diagnosed with autism now what? And that’s a valid question! What do you do next? Where do you go for help? How do you even begin? This first step may shock you, but I assure you it is perfectly natural. I can also assure you that whether you want to or not, you WILL do it. That first step is to go through the grieving process.
You Said I Have To Go Through The Grieving Process?
That’s right, the grieving process! You know; denial, anger, bargaining, depression and acceptance. You may say to yourself, but I’m not going through a loss, why would I go through the grieving process? And I say to you YES. You are going through a loss. You are going through the loss of your dreams for your child.
Later you may even go through it a second time as you recognize the loss of normality for your family. For your freedom of adulthood as parents, and the possible loss of some friends and potentially family who may not accept your child’s diagnosis or the behaviors associated with autism.
Don’t let me scare you, because it sounds worse than it is. I only point this out because I want you to understand that it’s OK. It’s normal. There is nothing wrong with you for feeling the things that you feel. Just remember that these steps are not linear. Not everyone will go through the same steps in the same order or the same way. Men for example typically lean towards denial whereas women tend to be sad, but accept things more readily. It could be completely different for you and that’s alright. Just recognize it for what it is and accept it.
My child has autism, what help can I get?
So where do we begin? You have the diagnosis, maybe you’ve even gotten a second opinion. Whatever the case, you are saying to yourself, “Ok. My child has autism, what help can I get?”
That’s a pretty broad question. A lot of things depend on the age of your child, the severity of the diagnosis, where you live, what insurance you have. Would you like to know the number one thing that will determine the majority of the help you can get? YOU! Your determination, your persistence, your willingness to educate yourself about everything you can.
With that in mind, let’s point you in the right direction on where you can go to get help.
First Steps To Getting Help
- IDEA (Individuals with Disabilities Education Act) (link opens new tab to official government site) ensures that children who meet specific age and ability requirements are able to access free services. Sounds great right? Read between the lines and you’ll see that it does NOT mean your child qualifies just because they are diagnosed with autism.
- What this DOES mean however, is that your child CAN be eligible for these free services IF they demonstrate the need for specialized services. To do this, you need to contact the Early Intervention agency in your state/location. Every state has them. From there, you can go on to see if your child is eligible. For more information about this, see our article 2-5 Year Olds. Will Anyone Help Me? Despite the title, much of the information on this page applies to autistic children of all ages.
- Apply for state funded insurance such as Medicaid. It doesn’t matter if you already have other insurance coverage. Apply for this right away! In most states, if a person is diagnosed with a disability before age 22 they will be automatically qualified. This will give you and your child additional additional resources and services, especially as they become adults.
- Apply early for a Medicaid Waiver. Medicaid Waivers are available in most states and are sometimes known by different names. It’s important to note that many of these waivers have waiting lists that can last for years so apply early! For more information, here is a list of waivers by state. medicaidwaiver.org
- Join a local autism parents support group. So many services and resources are only offered locally. By joining a group, you will be socializing directly with other parents who have been where you are, and who will have relevant information.
The steps listed above are ideal for nearly any family who has a child diagnosed with autism. In addition to this, there are additional places you may want to look for help depending on your situation.
There is the Achieving a Better Life Experience (ABLE) Act of 2014 which is a tax advantage savings program to help save money for long term expenses that is modeled after the 529 education savings plan. There are Community Action Agencies available in nearly every community across the country that offer assistance to low income families or individuals, and many many more resources based on your unique needs.
Educate Yourself About Autism
If you’re new to autism there is SO much to learn, and it can all seem so overwhelming! Here’s an example of what a real conversation with another autism parent might sound like.
The GP referred us to the CMHC to see the Phd in order to administer the MASI to John. The Phd gave a dx of ASD, ADHD, ODD and SPD based upon the DSM-V. Of course in the DSM-IV the dx would’ve been ASP and not ASD. They suggested we consider ABA or CBT and also recommended an ST evaluation followed up of course by a visit to the LCSW for some family therapy. Now his MSW is working with him on his ADL’s, but he still hasn’t grasped the concept of picking up after himself which is sending my own OCD into overdrive!
Confused yet? Don’t worry, you’ve got this! But it does show that you really have to educate yourself. YOU are the best advocate for your child. YOU are the one who will have to fight to ensure that he or she is afforded the same opportunities in life as any other person. And YOU will be the voice for your child when talking to Dr’s, when working through IEP’s (Individual Education Plan) with the school, when deciding which therapies to use and which ones to not use.
I didn’t know jack crap! -Bella
My wife Bella has said that in the beginning she felt like Superwoman. “I got this. I’ll take care of that. I’m on top of everything….” Then (in her own words) she realized that she didn’t know “Jack Crap”! Every time she felt like she knew all she needed to, she found herself woefully unprepared for something that would happen.
Your education about autism never stops. Join online autism groups in addition to local groups so that you can talk to other autism parents and see where they get their information. Continue to read books, websites and articles related to autism and learn all you can. There are new programs, new resources, new therapies being developed every year. Some are completely useless while others may be of great benefit to you.
Our son John is in his late teens now, and we are still members of several online groups as well as local ones, and will continue to be long after he has grown and gone. You never stop being a parent, and this is especially true when you are an autism parent.
Tell Your Family And Devise A Support System
One of the saddest truths you will face as an autism parent is that although most people in your life will be supportive, there WILL be people you know who do not accept your child’s autism diagnosis and/or the behaviors associated with it. Accept this now and prepare for it.
It won’t typically be an outright refusal to your face as if you’re lying. It will be the little comments like, “He just needs to be disciplined”, or “All kids do that. That isn’t autism”, or “I knew kids like that when I was growing up. It’s just a phase that she’ll outgrow as she becomes an adult”.
These people don’t mean to be hurtful, and are usually just trying to be supportive and helpful in the best way that they know how. Educate them! You know your child better than anyone else. Help the people who are pillars in your life understand which behaviors in your child are autism and which ones are simply the traits and characteristics of your kiddo being themselves. Help them to understand not just your child, but autism itself so that they can better support you and your child.
No one will understand your kiddo better than you, but you can create a support system of people who will be there for you when needed.
Autism And School
Some of the biggest worries parents have after a diagnosis involve autism and school. Will my child be able to attend public school, or should they go to a special school? What accommodations will need to be made for my child, and will the school be able to handle them? Should I look into homeschooling?
It doesn’t matter if you’re raising a child with autism or a neurotypical child, sometimes there are challenges we face as parents that simply don’t have black and white answers. By law, schools are required to accommodate children with disabilities. That doesn’t necessarily mean that your local school will do a good job of it, so maybe a special school would be better.
Public schools offer your child the best opportunity to socialize, but also have a higher risk of bullying. On the flip side, homeschooling requires you as a parent to have the time to perform the actual task of homeschooling, but also provides a safe environment for your child where you can focus on their specific needs. There are pros and con either way, and more importantly there is no concrete right or wrong answer.
What Do I Do? Tips To Get Started.
- Three laws guarantee your child’s right to an education: Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Act (IDEA) (1975, amended 2004), and the Americans with Disabilities Act (ADA) (1990) (links open in new tabs to the corresponding government pages)
- These Acts combined give your child the right to an education AND an education that is non-restrictive and accommodates special needs.
- It is the schools responsibility to meet your child’s needs, and to find the resources and/or personnel to do so.
- Note: You as a parent DO NOT have the right to determine if your child is eligible under the law. You CAN however, request your child be evaluated by the school, at the school’s expense, to see if he or she qualifies. You also have the right to appeal and request a second opinion from an independent entity.
- Schools are not required to evaluate your child simply because you request them to do so. If they do not feel that your child requires special accommodations to meet their education requirements, they have the right to refuse your request, but must provide options if you wish to appeal.
- Private special education schools are also an option. Depending on the severity of your child’s autism diagnosis, this may be an ideal choice. Unfortunately the costs associated with private education can be prohibitive for some. Since public schools are required to provide an education, there are not many resources available to help cover these costs. It is still worth researching since many grants and resources are local.
- Another option for education is homeschooling. If you decide to go this route, don’t let anyone judge you! It is a viable option for your child’s education, and is often used successfully by autism parents.
Weigh Your Options
Regardless of which option you choose, there will be pros and cons. There is no absolute right or wrong answer. What works best for one family, may not be the best choice for another. What works best for the first few years of your child’s education, may not stay that way throughout all of their school years, and you may find that you need to make a change.
Keep in mind that no matter which choice you make, there will be some people in your life who agree and others who disagree. You can’t make everyone happy. You can only do what YOU feel is best for your child, your family, and your situation.
Should I Put My Autistic Child In Therapy
As we’ve discussed throughout this article, this answer depends upon your specific situation. I do have some tips and advice however. There are numerous therapies out there, and ALL of them work sometimes, and ALL of them fail sometimes. There is not one single therapy that can guarantee a 100% success rate, and if you find one that makes such a claim I would advise staying away!
If you decide to utilize therapy for your child, you need to make sure that you seek treatments that are based on their strengths and needs. You also need to make sure that the treatment is realistic for your child AND for you! Equine therapy is great, but what if your kiddo is afraid of horses? What if the nearest place that offers it is two hours away?
Do your research before starting any therapy. So often we find ourselves wanting to believe that the latest trending Facebook ad which promises that you will lose 30 pounds in the next 30 days will really work! Be realistic about your expectations. You can find more information regarding therapies here Treatments-Who? What? When? Where? How? Seriously???!!!!!????
Summing It All Up
This article is intended to give you the starting steps after your child is diagnosed with autism. Everything we’ve discussed is just the tip of the iceberg. Entire articles can be written on every subject that we’ve touched on and much more.
An autism diagnosis is not the end of the world. You’re kiddos future may be different than you had first imagined, but they will have a future nonetheless, and it will be largely shaped by the efforts you put forth. You will find happiness and joy to balance out the hard times. Often times you will face tough choices that have no clear cut right or wrong answers. It’s OK. Continue to educate yourself and those around you. Continue to advocate for your child and never lose sight of your goals. Most importantly, always live in faith and not in fear.
If this information has helped you in any way, or if you think it would benefit anyone else, then please share it and help others. Don’t keep this a secret!