Thoughts About Diagnosis, Therapy, and Early Intervention

(Trigger Warning: ABA Reference)

Both my kids were diagnosed with Autism when they were both already in elementary school. The school had nothing to do with it. I went to a private psychologist for the evaluations. I actually had to convince the school that both were autistic. To them, an autistic boy was someone who threw chairs and did not understand puns.

The school wouldn’t believe me when I showed either of my children’s evaluations. My son is a textbook autistic child, has been that way since day one, but he internalizes his stress and shuts down rather than explodes. He also loves puns.

Mytumblr_inline_nobw3kbKgp1rxc9ln_540 daughter is also a textbook autistic child, but she is a girl who is quiet at school and tries her best to hide and go unnoticed. She internalizes everything, then when she is in a safe place, like home, she explodes. 

Here is a post I wrote addressing stereotypes and misconceptions about autistic children – Stereotypes and Misconceptions – There is more to the Story.

My son was seven years old when he was diagnosed. He was the first of us to be diagnosed only because he was in counseling for depression and the counselor noticed he wasn’t making eye contact. My daughter was ten years old when she was diagnosed and was diagnosed with Bipolar two years prior. I was diagnosed after both my children were at the age of 36. That was almost five years ago.

People have asked me why my children were diagnosed so late, since kids are now diagnosed as preschoolers and sometimes even younger. I tell them that I saw nothing out of the ordinary with them. They were like me and I hadn’t been diagnosed yet. You can read more about that here – How I Found Out I Was An Aspergirl.

Here is a reflection I wrote after the one year anniversary of being officially diagnosed – Life as an Aspergirl – Reflection.

Lots has changed since I made my reflection post, lots of detours, redirection, and starting overs, but that is a story for another time. 

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Both my children have been in counseling for mental health issues since they were very young. Counseling also served to teach them coping skills once the determination of Autism was made. They needed help in learning how to navigate in a world that is not designed for them. They also needed help dealing with depression and debilitating anxiety.

I never once put them in ABA (Applied Behavioral Analysis). I wouldn’t put them in ABA even if I had known about their Autism earlier. ABA is torture, pure and simple. Many adults have come out stating the abuse they suffered, many developing PTSD due to their experiences with ABA as children. I never went through ABA myself, but I observed through a two way mirror a three hour period of time of two boys being subjected to ABA. You can read about that experience here – Intial Reaction to ABA.

I am a teacher. I understand the importance of early intervention. I wish I had known early on that I am Autistic. I might have been spared much of my struggles over the years had I known. I didn’t get the luxury of an early diagnosis and early intervention, yet I made it through.

I want people to understand that there is no magic window that everything has to be accomplished during a specific time when a child is growing and developing. Hope is not lost when this supposed magic window closes. I know this from personal experience as a teacher, as a parent and as an actual autistic person who wasn’t diagnosed until adulthood. I had to relearn some skills and over come other unhealthy ones that I had developed on my own as I tried to survive in a world I didn’t understand. The point is, you have time and all children develop when they are ready and at their own pace.

Yes, a majority reach their milestones about the same time, but just like all pregnancies are different, all children are different. My son has dysgraphia, something that wasn’t diagnosed until he was in sixth grade. I once had my son’s first preschool teacher tell me that if he didn’t figure out how to hold a pencil correctly by four years old, he never will. That claim she made was complete bull.

I had many, many kindergartners come into my science classroom over the years that had never held a pencil, or used scissors, or even knew their colors, numbers, or letters. Guess what? They all learned how to hold a pencil by the end of the school year.

Both my children struggle with holding pencils. Both have dygraphia that was diagnosed when they were older. They both use those fat kindergarten pencils as an accommodation, a pencil that they both can hold correctly. If that preschool teacher of my son’s had bothered to try to have him use a kindergarten pencil or put a thicker finger holder on a regular sized pencil, he wouldn’t have struggled so much with holding a pencil in the first place, but I digress.

KeychainAs I have stated, both my children have been in counseling for some time. My daughter is now 15 years old and my son is 13 years old. I live in Washington State. Here, when a child turns 13 that child has the right to decline treatment unless it is inpatient care. At 13 years old, children in this state sign their own release forms.

My children can legally refuse to go to counseling, but they don’t. They actually ask to go, because they were never forced, they were never pushed into compliance training (ABA), and they were always told why they were being asked to attend counseling sessions.  They had buy-in into the treatment they were receiving, and it made a huge difference in how affective the type of treatment they were receiving was. 

My daughter had OT (Occupational Therapy) at four years old. She has always wanted to go back, but we were living where we didn’t have access to a private OT and the school wouldn’t qualify her for OT services. OT is available where we live now and my daughter is once again back in OT by choice. I feel my son would really benefit from OT, but it is up to him. The OT therapist is going to allow my son to observe during his sister’s OT sessions to help him feel more comfortable. If he decides to give OT a try, then great! If not, then I will respect his decision. It is his body and he has the right to decide what happens to it. 

I understand that there is a problem with giving very young children a say about the type of therapy they receive, but my son was six years old when we started talking to him about counseling. He was depressed. He knew something was wrong even if he didn’t know the word “depression”. He was tired of being sad and angry all the time. He wanted help. My daughter was eight years old and she didn’t like how she felt with all her ups and downs. She also felt so guilty after her rages. She wanted help.

Kids can understand a lot more than many adults give them credit for. Sit down and talk to them. Even non-speaking autistic children communicate and understand a lot more than it might appear. Let them have some sort of say in what happens to them and let them express their concerns.

Here is a useful link for healthy interventions – 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm.

autism-tshirt-1If you have to fight to get them to therapy, something is wrong. If they fight with the therapist, something is wrong. If they are quiet and subdued during therapy, but loud and talkative at home, something is wrong. If they crumble into shutdown or meltdown after therapy, something is wrong.

That “wrong” thing could be incompatibility with the therapist, ineffective therapy strategies, unsafe sensory environment, abusive techniques, or a missing diagnosis. My children have been evaluated twice and discovered additional conditions each time. It now looks like my daughter will have to be evaluated a third time soon due to questions regarding her co-existing conditions. My daughter was born autistic, but her Autism was overlooked by the so-called “experts” for years for various reasons.

For more information regarding those various reasons, click here. There is a link to an additional article by Tania A. Marshall embedded in the title. 

Also, not all conditions show up early on. Learning disabilities, such as dyslexia, can be hard to diagnose early on. My daughter was nearly 13 years old before she was officially diagnosed even though it had been suspected since she was eight.

Unfortunately, life can be hard and traumatic, especially when adults do stupid things without regard to children in their care. My son developed PTSD and agoraphobia at 11 years old due to irresponsible choices an important adult in his life made. Mental illnesses can show up later. Personality disorders can’t be diagnosed until the child is much older, closer to 18 years old. This is what we are facing with my daughter right now. 

Neurological evaluations are expensive, so trust your gut and do the research. Learn what traits are actually autistic traits. Don’t just assume or excuse certain challenging behaviors as autistic. These challenging behaviors could be an untreated co-existing condition.

Listen to people who have these diagnoses. They are the true experts. If you feel something is not right or is missing, then you are probably right. Don’t just take the so-called “experts” advice or conclusions. My children and I have been on this journey for a long time. You have to keep moving forward, don’t give up, and find what works without causing trauma.

The story of my son’s anthem – Keep Moving Forward – Move Along.

A poem by my daughter – “The Sun and the Moon” – Expressions of PosAutivity: #AutismPositivity2014.

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(Image found at naruhinaph.tumblr.com)

**I do not own any image used in this post. Unless cited, all credits are linked with each image.

 

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