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Autism Diagnosis: 5 Things I Wish I Had Known

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.

  1. 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

If these aren’t possible, or for additional learning:

The RDI Book :


I Love You Rituals:

Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley Greenspan

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 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
  • ADHD
  • Obsessive-compulsive disorder
  • Tourette syndrome
  • General anxiety disorder
  • Clinical depression
  • Anxiety
  • Auditory Processing Disorder
  • Apraxia

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?


* This post contains affiliate links. If you click and make a purchase it is no additional cost to you, however, a small kickback is given to us so you help support the Guiding Autism Blog. Thank you. 


Diagnosis Autism

Diagnosis Autism


I’m looking across the dinner table at my now 6 year old daughter navigating two IPads while eating. Most parents are amazed at how the time flies by with their little ones.  I am most amazed at how much she has taught me. At age 40 I had this little girl and went through all the normal transitions of going from a life where you do whatever you want, whenever you want, to one dictated by late nights, crying (both me and the baby), and feedings. Six months into our transition our lives changed, her life changed, and our “normal” was changed forever.

On the day of her 6 month vaccinations we landed in the ER with 108 fever and seizure activity. The doctor says “Let me guess…they gave her a whole bunch of vaccines at once? We see this every day.” That part of our conversation made it seem like what was happening to her was routine, however after the fever subsided they were very concerned that she “was acting herself” before they let us go home. It’s harder than you would think to determine this at 6 months of age. She was lethargic, which they said was normal after seizures, and she went through several hours of absence seizures. We were sent home.

After we were sent home we noticed changes our little girl. She had been holding her own bottle since she was a few weeks old and had recently started self feeding with a spoon. Now she seemed to have an aversion to using her hands for anything. She used her fists to hold a bottle. She no longer used a rattle. She was no longer able to use the spoon. She was also very “spacey” which we learned was more seizure activity. She started making growling noises. The baby babbling that we associate with a baby’s attempt at talking stopped. We lost eye contact. She was obsessed with anything colorful and\or spinning. She could play with the twang of the spring door stoppers forever. The only way to calm her was through colorful animation and music. We were scheduled with neurology at Barrow Neurological Institute at Phoenix Children’s Hospital. They had a three month wait list to be seen. During that time I continued to research on my own what was possibly causing seizures and this behavior.

During that three months I started researching her symptoms. What was causing her seizures?  I had read that soy could cause seizures and she had suffered a lot of gastrointestinal distress from the day she was born and had been put on soy formula early on. She couldn’t even tolerate breast milk. I decided to discontinue soy a couple weeks prior to see the neurologist and during that time we saw no more seizure activity.

The day of the neurology appointment the doctor assessed her and ordered an MRI. She said she sees this a lot with the DTAP vaccine and she believe this was what caused her reaction. She said not to vaccinate again with DTAP. She told us that some of her patients that experience this get better and some go on to receive and autism diagnosis, epilepsy diagnosis or both. Since we had seen a decrease in seizure activity she said she hoped Samara’s brain would continue to heal and she would be fine, but only time would tell.

Samara did not get better. In fact shortly after we saw the neurologist the stimming began. She would sit in her jumper and lift her legs , with her muscles contracted, up and down over and over until her face was red and she was sweating. She would do that same thing on her back, doing straight legged leg lifts, and scrunching up her face. This was not seizure activity as she was aware and you could tickle her and it would stop for a second. We had contacted early intervention, which frankly wasn’t much help. They did do an assessment which was just a lot of questions, that lead to an “at risk for autism” result that we could take to our pediatrician. There was a 6 month wait list to see a developmental pediatrician. Samara was diagnosed with “classic autism”, the most severe form of autism, in January of 2013 at age 2.

This is a very abbreviated version of our diagnosis journey. The amount of uncertainty, our own and the doctors, and friends and the information we consumed during this time is dizzying. It was like she was born, and then she had autism. Everything in those two years in between was such a whirlwind.

During the following years up until today she has received 45 hours a week of therapies. We have spent thousands, most of which we did not have, to care for her and help her heal. We have and still are searching for the best interventions and biomedical treatment for her and she has made great improvements. We have not had any evaluations to tell us where she is on the spectrum since that original diagnosis, nor do I want to pursue that. I just keep looking forward.

Daily Life

Samara wakes up very happy. More happy than anyone I have ever seen honestly. She chatters away holding her hand in just the right position by the side of her face just catching her peripheral vision. I don’t understand everything she says but I pickup some words here and there. When she is done she moans with a big grin on her face and I say good morning. We have been working on greetings for awhile and she now has “good morning” down pat, when she’s ready.

After she gets up every morning we give her supplements. She takes a topical methylcobalamin which helps her focus. Without this her stimming (self stimulatory behavior) goes from a part time job to a full time job. It could take her several minutes to get a across a room because she’s too busy with hand gestures and vocalizations. She gets a liquid vitamin supplement called Restore which is for digestive health, leaky gut syndrome.  Without Restore she has problems with constipation and she will also lose her ability to speak. Our newest supplement is NanoVite which increases glutathione, decreases inflammation and acts as a liver detox. Her receptive language has improved considerably with this. She just recently started tolerating a shower instead of bath which makes the daily routine so much smoother. After her shower we work on dressing which has just recently mastered. “Find the big hole” was our most recent success on helping her understand where her head was supposed to go and she can finally manipulate the shirt somewhat to get it on without too much assistance.

During the day she spends a lot of time with academic apps on her Ipad. We work on more structured activities as well that focus mostly on life skills. We  have spent a great deal of the years taking her out into her world, stores, parks, the zoo, restaurants, traveling to another city, staying in a hotel. This was good, bad and ugly at times and still unpredictable to this day.


She had suffered some regression in speech in 2015, but has been slowly recovering. You cannot communicate, as in a back and forth conversation with her, but she can label things, ask for help, point to things she needs. She has had an improvement in receptive language, or she is getting really good at guessing, its hard to say for sure.  She has added some sentences to her repertoire this year which we are very excited about. She has greatly increased in eye contact which was recovered naturally. We did not do a forced eye contact through therapy. We don’t believe in forced eye contact, or teaching scripted answers for “social skills”, or stopping her stims. If these things change it will be of her own natural growth and progression. The chewing that people seeing during the teething months just never stopped for her after teething and she would chew holes in her clothes, but that has also subsided with biomedical intervention.  She is fully potty trained as of two months ago. She still has vocal stims, mostly from excitement/visual over stimulation. Her meltdowns have subsided to tantrums. She has regained the use of her hands although she is still struggling with fine motor in this area.

She started RDI therapy in April this year and that has been the best thing ever for our entire family as we have exited the state’s funded intensive ABA program. We homeschool and she still goes to speech, occupational therapy and music therapy. We are finally taking back control of our lives and being a family again, connecting, growing and at times it’s almost like we are meeting each other for the first time. 🙂 It’s a beautiful thing.