I need your help to get help. I have a chance to go to a conference specific to a serious subset of Anthony's Autism that isn't recognized in the US.It will give us the opportunity to get the help we can't get in the US.
I have been blessed with two beautiful little boys, Anthony who is 7 and Luca who is 5. Both of my sons have Autism Spectrum Disorder (ASD) and the diagnosis alone comes with a lot of obstacles and challenges, especially when they are on completely different ends of the spectrum. Luca is “non or pre -verbal” meaning he can speak and use words but his functional/social/emotional communication doesn’t come naturally and he is taught through repetition. This can be challenging and at times lead to acts of physical aggression. Instead of stringing words together to ask for something simple like “I want a drink”, he resorts to other options that don’t involve words or other people if possible.
Anthony was diagnosed with ASD at the age of 2 and ADHD at 5 years old. He is a very friendly boy, and wise way beyond his years. He is an artist who loves to draw. Anthony also has an exceptional grasp of comedy, comedic timing and a new found love of acting. He is very social and wants to interact with his peers, he will even look you in the eye when speaking. Some of his particular traits don’t coincide with the more typical ones we think of when thinking of a person with autism. People often ask me if I’m sure his diagnosis is correct, they say things like, “he really doesn’t seem autistic”. It mad us question if we are missing something with his diagnosis. After a ton of research, I found a website based out of the United Kingdom that spoke about something called Pathological Demand Avoidance (PDA).
PDA is a behavioral characteristic that can be seen in children or adults. People with a PDA profile avoid everyday demands and expectations. This demand avoidance can come with high levels of anxiety and can appear excessively controlling and dominating, especially when they feel anxious. However, they can also be confident and engaging when they feel secure and in control.
To put it in layman's terms, his brain acts as if he has had a severe traumatic experience. When asked or told to do something, his brain reacts with a “fight or flight” response. This is out of anxiety and need of some autonomy or sense of control in the situation being presented. The brain has one job and that is to keep us alive, his brain is on high alert and has an auto pilot kind of response. When asking Anthony to do just about anything, his auto pilot response happens about 90% of the time, even if he disagrees with what his brain is telling him to do or say.
Example: when he gets home from school he is expected to hang up his jacket and backpack, a simple task or demand asked of him and his response is never “ok mom”. Most days he will come into the house and drop his bag and coat wherever it lands and go to whatever activity he has planned in his mind. If we ask or remind him to hang his things up, his response might be an excuse or delay like, “I will in a minute” or “I can’t, my hands hurt”. He might say “Only if you help me” making it a shared task. He also uses negotiation tactics, “I‘ll hang my coat up if I can have a scoop of ice cream” to which my response might be “ok, that's fine''. He will then come back with “Ok but I want 3 scoops of ice cream and chocolate syrup” and we will go back and forth negotiating until he believes he has enough control over the situation and got something in return for his efforts. Hopefully one day his negotiation tactics will bring him much success, but for now it makes life exhausting
Just imagine, every time you ask your child to do something you have to be prepared for an excuse or negotiation response, or the third option a full blown meltdown. Anthony's meltdowns include throwing himself on the floor kicking, hitting, flipping furniture, breaking things, screaming or screeching in a high pitch tone, and physical aggression toward anyone/thing around him. This is constant day in, and day out, always over simple, everyday tasks and basic expectations we as humans need to do to be a healthy and successful members of society. This is just the tip of what living with a child who has PDA is like. It makes for a very stressful and hard environment for anyone involved, including school and social situations .
After researching and reading the list of diagnosis qualifications, I took the test. Anthony checked 13 out of 15 boxes and I was actually ecstatic. I finally felt like I found the missing piece to his diagnosis that has the potential to help him become more regulated and let his amazing personality be the center of attention instead of his perceived behavior problem. As I kept reading I immediately became discouraged. This is not a diagnosis recognized in the United States in the DSM-5 which is the standard classification of mental disorders used by mental health professionals in the US. It felt like I hit a brick wall going 100 miles an hour.
I finally found what I know and believe to be the missing component in my child's diagnosis and I can’t even find him the help he and our family needs! Why, because if it’s not recognized as a diagnosis in the states insurance will not cover it. The therapies that I have found in the US treat children for something called Oppositional Defiant Disorder (ODD) which is similar but different. PDA is a crippling inability to comply. PDA children do not respond to typical therapies, because of how their brains are wired, it’s not a choice. PDA children are not always choosing to be naughty, disrespectful or argumentative, but are, in turn following an auto pilot neurological command. This happens even if they do want to do what is asked but the brain reacts on autopilot. PDA is now a major part of our family's lives and presently I am stuck at a crossroad. Due to the lack of recognition for PDA in the states my options are limited to how I can get my child and our family the help we need.
There is an organization called PDA North America working to make PDA a diagnosis and make therapies available and covered by insurance in the states. They hold an annual conference each year that brings people like parents, neurologists, doctors, therapists and other professionals working with PDA and Autism together to share resources. The conference is meant to educate, bring awareness to the cause, while helping people network and build communities of support to develop help for people and families across the US.
This year the conference is in Chicago March 2nd -4th and after talking to my husband we said that this is something we must make happen no matter what. After calculating the cost of everything it came out to around $1500 just for myself to attend. This is not including anything extra,These fund would help me with the registration fee, hotel, flights, transportation and meals.
After looking at our budget we decided there is no way we can come up with $1500 in such a short time. We are a one income family who live paycheck to paycheck. I have been unable to work because of the intense needs, schedules and attention my children need. I am their primary caretaker as well as their advocate, lawyer, social worker, teacher, therapist, taxi, and mom in between all the roles I play in a day. I am a dedicated mother who chose to bring children into this world with all the intention of bringing them up to be successful and respectable people. This is my job and I will do anything I can in my power to make that happen.
I am not too proud to ask for help when and if I truly need it, and this is something my son and our family need more than anything. Any and all contributions will go to the conference. With any additional funds received, I would take 2 accredited PDA courses and 1 certification class online, pay for 1 on 1 therapy coaching sessions with leading therapists Kristy Forbes and Laura Kerbey as well as put a dent in purchasing my long and ever growing list of books and resources regarding PDA and Autism.
This is my opportunity to better my son and family’s life, and a real opportunity for people to help us out. We Thank you for taking the time to read a piece of our families story, and ask that you please remember to be kind to people who are different, there is always more to the story than what you see!
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