Everyone handles the day of diagnosis differently, shock, devastation, denial, grief, blame, or relief. For myself getting that diagnosis gave me direction. I wanted to understand these changes in my child and how to help her. In the end, she has taught me more about myself than I ever bargained for, but that’s another story. On with the list.
- Early intervention is a double edge sword
When we get the diagnosis and the doctor tells us about the importance of early intervention for the best possible outcomes, it tends to create panic and your internal maternal clock starts ticking to a new time clock. Parents immediately go into crisis mode, if they weren’t already from dealing with confusing behaviors. We throw our child into many hours of therapy. Our role as parents is transformed into the role of advocate and we run our child to this therapy and that therapy, day after day, after day.
Now I want to note here that depending on where you live this may be variable. I Live in Arizona and they have a program here specifically for autism that was intended for children who were at high risk to be institutionalized. Our daughter was diagnosed with level 3 autism and because of this, she was eligible for 40 hours a week of in-home ABA therapy, 1 hour a week of music therapy, 1 hour of speech, and 1 hour of occupational therapy. They are also able to get behavioral health services if necessary. Many children are able to increase speech and occupational therapy hours based on need. Now before you pack your bags, close that tab on “the best places to live in Arizona” and think about this further.
This is where it gets interesting and I want you to really think about this one. Autism is a communication disorder. Children can have difficulty with speech as well as social interactions and relationship building. Who do children typically bond with, model from, and learn speech, social and relational skills from? Parents. I was spending 50 hours a week at work, and my child was spending another 45 hours in therapy. Even if one parent can stay home full time this is 45 hours your child spends away from you and away from learning those skills.
Now you may think, but the therapy is what will help my child. I can’t possibly help my child. I’m not trained like the professionals. That brings us to number 2 and 3.
2. Professionals don’t know what’s best for your child.
Compared to the general public, professionals are the second most knowledgable when it comes to autism. However, there is only one person that knows what’s best for your child. It’s YOU. Yes, YOU.
I know you didn’t go to college and read textbooks about this stuff. Regardless, you don’t need a Ph.D. or a Masters to know what’s best for your child. I know its hard to believe in the early years when every day may feel like you’re walking on eggshells and you feel like every inborn or learned resource you had about parenting is failing. We aren’t even going to discuss what your relatives think here cuz that’s a different conversation entirely.
There will come a moment, probably after you start therapy, that your gut will kick in and tell you what’s right. When someone holds your child down to stop them from stimming perhaps. Or when you see them getting more agitated and anxious when one flashcard becomes one too many flashcards. When they take away their “positive reinforcer”, usually a favorite item, to withhold in exchange for behavior modification. You’ll know. Follow your gut.
Wait, professionals are the SECOND most knowledgeable? Yes. Who’s the first most knowledgable about autism then? AUTISTICS! I highly encourage you to join a group that accepts parents looking to learn more about neurodiversity. Here are a couple on Facebook that I recommend.
3. Even more than therapy, she needs you.
If I had it to do over I would go back and skip that 40 hours a week of aba.
Now I don’t want to negate the importance of getting help altogether. You most likely do need guidance.
- I would have asked more questions to the SLP about the “why” behind speech therapy.
- I would have asked the occupational therapist more specific questions about how to help my child at home.
- I would have spent a great deal more time in actually autistic groups
- I would have sought out an intervention that focuses on helping my child communicate beyond scripts, focuses on relationships, thinking independently, regulating emotions and includes me as a part of the process.
*Here are some recommendations:
DIR: Floortime http://www.icdl.com/dir
If these aren’t possible, or for additional learning:
The RDI Book : https://amzn.to/2GB7nuE
I Love You Rituals: https://amzn.to/2tfJP6J
Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley Greenspan https://amzn.to/2tfJP6J
4. Don’t worry about the milestones.
Your child is on their own trajectory of growth. Think about when you were a kid in school. Remember the kid who was so smart? Maybe that was you? 😉 The kid that was always in trouble? The kid that was always struggling and couldn’t keep up?
Chances are the trouble maker was bored to death. The kid doing well just happened to be on a typical trajectory for his grade and age. The child that was struggling wasn’t struggling because he’s not smart. He was just learning different things on a trajectory that was different from what the educational system had planned for him. Yes, even neurotypical children learn different things at different ages. Our schools and doctors have these milestones that kids are supposed to fit into but guess what? It’s not set in stone. Every child is unique and your child is no different. Your child is capable of learning and growing in every way.
Don’t compare your children to milestones, other children, grade levels etc. If you’re still on the Parenting.com email list of milestones do yourself a favor and unsubscribe. Someday you may want to return there when things feel calmer, but for now, you just need to focus on your child and meet them where they are at. Keep working on what they need help with. Don’t forget to stop and smell the roses along the way. Enjoy every moment. Don’t miss their childhood worrying about what tomorrow may or may not bring. Save tears for tragedies, this is not one of them.
5. Not all of what you see is autism.
I think this one is really important too. Its taken me a great deal of time to sort this out.
Comorbid conditions are common amongst autistics and can include:
- Gastrointestinal disorders
- Sensory problems
- Seizures and epilepsy
- Intellectual disability
- Obsessive-compulsive disorder
- Tourette syndrome
- General anxiety disorder
- Clinical depression
- Auditory Processing Disorder
I have a really good resource for this one as well. Another blogger that goes by Autistic Mama. She is an actually autistic mom raising her neurotypical and neurodiverse children. I highly recommend signing up for her newsletters.
Along with the fact that comorbid conditions can create confusion about what autism IS, what you also see in your child is simply your child. Their personality, their joy, frustrations, interests, all them. They are a whole person, just like anyone else.
I hope that you found this blog post helpful and insightful. If you’ve been on this journey awhile what were your top 5 things you wish you knew when your child was diagnosed? If your child is recently diagnosed what one thing did you take away from this article?
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