Your child has newly received an autism diagnosis and you are most likely overwhelmed with all the early intervention – OT, PT, SLP, IEP, etc.
My son was 2 years old when he was diagnosed and is now 14. I have learned a lot on this journey and I want to share a few essential things that I always think I wish someone would have told me at the beginning when my son was first diagnosed with autism.
1) Take it one day at a time.
Parenting an autistic child is a marathon, not a sprint. It is likely that you will get a lot of early intervention support and resources assigned to your child including occupational therapy, speech therapy, or even behavior therapy. In addition, depending on the age of your child, they may get an Individualized Education Program (IEP). Many parents express frustration that the schools and their providers emphasize education and skill-building training so that the child ‘fits’ into society or catches on to development delays. But I found that it is quite overwhelming as a parent to get be on top of all of these interventions that you forget to take time to just “be” and to enjoy this time with your son. All of this is definitely important, but not more important than connecting with your child.
All of this is definitely important, but not more important than connecting with your child.
2) Presume Competence
These two little words changed my son’s life. Even before I heard these words, I always believed that my son could understand more than he could express, but the simple concept of presuming competence opened my eyes to new possibilities which, in turn, expanded the opportunities I presented to my son. So what does it mean to presume competence and why does it matter? Whether it looks like it or not, assume that your child is always listening, taking in information, and understanding at the same level as his neurotypical peers. My son is nonspeaking and while I always knew he could understand more than he could express, I had no idea just how much he understood until he started communicating through spelling at the age of 10. The realization that he is cognitively at or above the level of his peers hit me like a ton of bricks and has changed everything I have done since. This blog post pretty much sums it up! Check it out and then take some time to think about how you can better presume competence for your own child.
With my son, I started by just telling him that I believed in him, I knew he understood and had so much inside of him that he wanted to communicate, and that I wasn’t going to give up until I found a way to help him express it. It still took a long time after that conversation for my son to finally be able to communicate through spelling, but in the meantime, his life had still changed so much for the better! He was not just an autism diagnosis
3) An autism diagnosis often has co-existing conditions:
For example, up to 65% of people with autism also have apraxia. In a nutshell, apraxia is a disconnect between the brain and the body that impacts a person’s control of their movements. Basically, someone with apraxia knows what they want to say or do, but the messages from the brain are not making it to the part of the body that needs to move in order to complete the action. This can affect speech and all other types of motor as well. If your son is having trouble with producing speech and/or completing motor tasks that would be expected for his age, I highly recommend asking whatever therapists he is working with about apraxia. My son has very severe apraxia, but I never even heard the word until he was 7 years old (5 years after his autism diagnosis). Understanding his apraxia was a game-changer because it helped me understand him in a whole new light. If your son does have apraxia, I would recommend looking for a speech therapist who is trained in PROMPT. It is one of only a few research-based apraxia treatments.
4) Have an open mind about exploring alternative programs:
While you should look for evidence-based programs and most likely will get only such recommendations from your child’s teachers, therapists and doctors, there may be other alternative approaches that may be useful. Parents with autistic or other special needs children, can be incredibly resourceful and have a broader and deeper spectrum of knowledge than providers that do not live this journey every day. For example, a game-changer for us was the Son-Rise program. We started Son-Rise when my son was 5 and it was one of those things that I wish I would have known about from day one. It made such a huge impact, not only for our son, but for our whole family. It helped me to connect with my son on a level that we had never experienced before. When I started Son-Rise, all of the training was in person at their campus in Massachusetts, but they are now offering courses online, so it is more accessible. If the cost is prohibitive, they offer scholarships. Depending on where you live, you may also be able to find a Son-Rise facilitator in your area that could work directly with your son. If this type of approach seems like it might be a good fit for you, you could also look for someone trained in Floortime or RDI, as these approaches are pretty similar to Son-Rise.
5) An autism diagnosis often comes with food sensitivities
Many children with an autism diagnosis, have food sensitivities that can cause gastrointestinal issues and affect their behavior, including their actual autism symptoms. The two most common offenders are gluten and dairy. Certainly, not every child with an autism diagnosis needs to be on a gluten and dairy-free diet, but it can make a significant difference for some. For my son, removing gluten and dairy was like lifting a fog around him. He was much less “in his own world” after we changed his diet. I’ll be honest…diet changes can get complicated, so if you’re feeling overwhelmed this may not be the place to start, but I wanted to throw it out there for your consideration because it’s not something that often gets mentioned by more traditional doctors and therapists.
This is a lot of information, so please feel free to ask me any follow-up questions and I will do my best to help. Communities like VitalXchange help you find your own as you are learning to care for your child. I would have loved to have something like this when my son was first diagnosed!
Jennifer Rainey is the mom of an amazing teen with autism, apraxia, and sensory processing disorder. She is a passionate advocate for her son and incredibly resourceful when it comes to advocating or finding creative solutions for her family!
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