Well, I promised I would write more about this when I had collected my thoughts. I can't say they're totally together yet, but, I wanted to at least try and put down in words some of what I'm feeling, post re-evaluation appointment.
I honestly wasn't expecting our son to technically lose his diagnosis at this first appointment. I thought the psychologist would want to do more testing and assessment, but, I could tell from when we entered the room that it was set up in a specific way to observe my son.
There were various 'toys' (3D maze balls, pin boards etc), so that he could see his unscripted interaction.
We explained where we were - that basically, our son had received his diagnosis at the age of 2, and that he was now at a point where he no longer qualified for special education services, he was skilling/testing out of speech and occupational therapy eligibility and that numerous professionals had told us that they just weren't seeing autism in their interactions and observations of him. That's not to say they didn't see other issues - some remaining attentional and anxiety issues, but, they just didn't see autism. Given this, we wanted to see if this really was the case - does he meet diagnostic criteria for autism, or not?
After our appointment, where we discussed various issues, experiences, interventions, and where the psychologist himself talked with him, we asked what he thought.
We were pretty surprised with the answer. Our son, in his opinion, didn't meet ANY criteria for autism. He said that he could see there were still a couple of little things that needed some 'tidying up', such as attention and focus, but, those could be addressed with neurofeedback - a therapy he recommended we look into.
So - we have recovery. Our son no longer meets diagnostic criteria for autism.
There are those who will insist that autism is lifelong, and those, like myself that view it based on its actual diagnostic criteria, in much the same was as other DSM diagnosed conditions, such as depression. The absence of the symptoms means the disorder is not present. And that's where we are.
I no longer have a child with autism.
I am no longer an 'autism parent'.
So, where do we go from here? Well, this, for me, feels like we get a do-over. We need to be mindful of the demands we put on our son, especially with respect to our expectations. He may no longer have autism, but, he has still walked a very long and stressful journey.
But, and this is a large but, he no longer has that label. He is no longer a special needs child. He no longer has a disability. He gets to live a normal life from here on. He is about to do his last speech and occupational therapy appointments next week, then, vision therapy will be the only therapy we will have on our schedule, and that should be wrapping up in the next few months.
I want to explore a couple of other things to help him with focus and concentration.
1 - We restarted The Listening Program. I've done it before with him, years ago, and honestly, it didn't really help that much. I wonder though if he was just too young. Now, we are doing it again, to give it one final try. We have 5 weeks left and will then assess if it has been of any benefit.
2 - We want to try neurofeedback. I am hopeful it can help with optimization, as recommended by his psychologist.
3 - We want to add in general things to try and help with concentration, attention and focus. I am not sure whether this means we try BrainBeat first (based on interactive metronome) or BrainBuilder (software supposed to help). We will do at least one, and maybe both of these. To come so far and not try to finish the job properly seems foolish.
What else?
We will continue to see his holistic/functional medicine doctor.
We can add in some fun sports or activities now that we aren't at therapy twice a week (such as swimming etc).
He could do an after school club such as Landsharks now that he doesn't have those after school appointments.
I want to travel more.
What about me?
Well, for the past 7 years, I've had to parent a very specific way, and I don't anticipate that changing too much, but, now the focus will move more actively towards encouraging him to spread his wings and be more responsible for himself. Which means that I need to be more hands off. This is a big change. For a parenting experience such as ours, I honestly feel like I have been on edge for the entire time. I feel like I have aged 20 years and it's time to claim some of that back. I need to take better care of myself, both physically and emotionally. But, that will take time.
The past 7 years has given me a very low tolerance for nonsense. I don't care if someone disapproves of my parenting or lifestyle - my son's diet, my discontinuation of regular pediatrics in favour of functional medicine, my methods for discipline, my utter lack of any belief in any religion. I feel that the results speak for themselves. I just feel like I've been through enough to even care what someone thinks of my choices, and am happy to cut off unhealthy relationships that cause more stress than bring joy. I answer to myself and my family - not to outside influences that really haven't been a part of our struggles or journey.
We're free. The world is our oyster!
