You Have a Diagnosis—Now What?

The time leading up to my son’s autism diagnosis was chaotic. We had been struggling for so long to understand his meltdowns and trying to reach him. It was a gift to know what was wrong. I felt relieved, but stunned. It was a relief because we finally knew what the problem was, but it also made me terribly sad because I knew he would face a lot of difficulties no parent wants for their child. I cried. But then I got to work. Because I knew that he needed real help ASAP.

 

Time is of the Essence

 

I knew from watching my little brother and my nephew, who are both on the autism spectrum, that early intervention is key to helping anyone on the autism spectrum overcome their difficulties. Everyone is different and each person progresses differently. But services can take time to set up and get going. Every company will need to do their own assessment to determine your child’s needs. Then there is an assignment to a therapist… And that all takes time.

 

There are also some services that your child will age out of. For example, some insurance companies cut off ABA services at age nine. I hate that, but it’s what they do. Some insurance companies (United Health Care is one) will give your child services based on their needs. So evaluating your insurance plan is a good idea.

 

I got started by finding my son a good Autism (ABA) therapist. I took his diagnosis to his school and got the 504/IEP process started. If anyone ever asks you if you should get a 504 or get an IEP, ALWAYS get the IEP. I got the 504 first, and teachers don’t have to follow it. But an IEP has a lot more pull and many more services attached. Some schools will tell you that your child has to be academically behind to qualify for an IEP, but don’t believe them. Often the school level advocate isn’t as aware as the district level. So keep asking questions all the way up the chain if needed.

 

Get an IEP

 

The school may discourage you, as they did me, but get that IEP. It is worth gold! The diagnosis in your hand qualifies you for an IEP. Often schools will discourage an IEP because it is more expensive for them. But I regret listening to the public school councilor. Over and over again, they botched my son’s program and things blew up in my face. My son was so jaded by the school, his teachers, and the councilor that eventually he was DONE. 

 

So we started home-schooling. And now, three years later, I am having to get an IEP (which can ONLY be done through a public school, not a home-school, private school, or a therapist) and it is a huge pain. So get your IEP up front. Once you get an ABA therapist, he or she can come with you to the 504/IEP meetings—and their input is so valuable! Sadly, as of now, a lot of schools won’t allow the ABA therapist in the classroom. So don’t be afraid to get your child an aid for the classroom, or a para (they help with classwork and help your child stay focused). Or, if possible, you can get your child into a private school that specializes in autism therapy. We recently found an amazing one, and my son loves it.

 

Push for what is best for your child and don’t let anyone intimidate you. This is a whole new world, with a new language of acronyms. Your child is your specialty, but there are people specifically trained to speak autism. So ask for help and let them guide you. Don’t do what I did! I thought I was a reasonably educated woman, especially since I had additional autistic family members. I figured that meant I knew what to do, but I didn’t. So get professional help.

 

Moms VS Dads

 

By now you know that men and women are different. (Duh.) We are different in the way we handle this kind of challenge too. Men tend to retreat into themselves till they can process the new info whereas women want to talk about it. My husband hid, so I went to my best friend. She tried to support me, but it wasn’t until I found another special needs mom and a Facebook group that I really found a place I could vent and learn.

 

Because my husband hid, he missed out on a lot of helpful instruction from the ABA therapist. For a long time I let him float along, until I started seeing conflicts between he and our son. My husband was lacking the skills and info to deal with our son appropriately. It was then that he started getting the training and I started sharing the tips I should have been sharing all along. It’s still a challenge in our marriage, and in our family, to keep my husband involved. 

 

Work Together

 

As a mom, and a dominant personality, I tend to take over. When our family was in this newly diagnosed phase, I started acting on my own. I would make plans, changes, and schedules without consulting or informing my husband. It caused some tension and it made him feel like I didn’t trust him anymore. It took some counseling for me to see that I wasn’t doing us any favors by leaving my hubby out. I learned I needed to work with my husband because we were still a team. And I am glad I did.

 

Which leads me to a great point. GET SOME COUNSELING. Go by yourself or go together. But remember you are getting all kinds of professional help for your child—and you need help too! There are a lot of divorces linked to being a special needs parent. But you can beat the statistics. My marriage has been strengthened by parenting our son together and being a team. So don’t think you are doomed for failure—you’re not. I also think some family counseling is a good idea. I take my son to a “talking doctor” every few weeks, and he has been amazing. I am learning to communicate with my child how he needs me to, and I’m learning a lot of good parenting skills.

 

He’s Still Your Munchkin

 

Sometimes when life throws the big stuff at you, it can change your perspective. When my son was first diagnosed, there was a brief period of time where I wondered if I knew my child anymore. But I have learned a big lesson: your child is not their diagnosis. They are still the sweet little one you brought home and the sweet kid you’ve raised. The diagnosis is just a new tool to help you understand and help your child.

 

So don’t be afraid of the diagnosis. As soon as I had professionals helping me and teaching me to be the kind of mom our son needed, life got much better. His meltdowns are less frequent and he is learning skills in a way he understands. His confidence is soaring. And now, three years later, I am so glad we found out he has autism. He is an amazing kid and one day he will be an amazing adult.

 

This article is based on one that was previously published on Abby’s page at Patheos.com