The regressive type of autism

Regressive Autism. Holy crap, regressive autism sucks. It hurts. It makes me cry. We have seen his sensory needs shoot through the roof, his understanding of the academic areas plummet, and his language and communication disappear. I can only imagine how frustrating it is for him.

When getting his evaluations even starting at 2, we found ourselves saying, well he USED to.

Q: Can he tolerate hair cuts?
A: Now? No, but he USED to.
Q: Does he do things for attention to make you laugh?
A: Now? No, but he USED to.
Q: Can he spend an extended period of time doing any one activity?
A: Now? No, but he USED to.
Q: Does he sleep through the night? Take naps? Get required hours of sleep in the 24 hour time period?
A: Now? No, but he USED to.
Q: Does he eat a large variety of foods and textures?
A: Now? No, but he USED to.
Q: Does he use ## of words?
A: Now? No, but he USED to.
Q: Does he play with a number of toys as they are intended?
A: Now? No, but he USED to.
Q: Does he play with a number of toys in a non conventional way such as watching the tires spin on a truck vs. playing with it driving?
A: Now? No, but he USED to.
Q: Does he know his name? How old he is?
A: Now? No, but he USED to.
Q: Does he rote count or say his ABCs?
A: Now? No, but he USED to.
Q: Does he use his fine motor skills with coloring, painting, cutting, etc?
A: Now? No, but he USED to.
Q: Is he ok with loud noises?
A: Now? No, but he USED to.

I recently had an instagram mom (and former teacher) ask the question:

Why does ASD cause him to go from being able to communicate to not being able to? I don’t know much about autism and I use you as my educational tools while I am deep in the mom trenches”

My reply: I am BY NO MEANS AN EXPERT but this is my understanding:

Honestly, we don’t know. Autism is a neurological disorder. After getting and EEG and MRI (because kids with autism are also prone to seizure disorders we had these tests done) his language center of his brain is performing slower. He has regressive autism so from what we gather his brain is either losing connections, is unable to connect, or his brain has some interference (sensory needs), in it’s connections to that part of his brain. We have to teach his brain to communicate in spite of the speed–create new neuropaths. It is exhausting and frustrating and it may or may not actually happen. There is no timeline of knowing either. We just have a whole lot of faith and love.

Regressive autism is hard. You don’t know what to say when people ask if he can do something. If he used to I feel like one should be able to say that he can, but we cannot get him to do it again, so we have to say no. Is it gone? I honestly don’t think so, I think his brain has wires crossed so he is no longer able to communicate what he knows or slow the need for sensory long enough to pull that knowledge out.

I am not going to lie to you, I think it is harder to have and lost then never have at all. We are at the point of trying to remember the last time he did something rather than the first. We are praying to regain skills over get skills. With a list this long of things to regain, we struggle to know how he can keep up with his peers.

Nolan is 5. In public places, in school, and in assessments he is expected to be 5. Nolan is not ready to be 5. At home he is safe and he is our boy. At home we love Nolan for who he is, for what he can do. Out in the world of school and peers, he is compared. As a mother, it is terrifying to send your little one off to school to be graded on things he used to do but cannot currently. To send him off with peers who may not understand him is also hard. (Want to freak out a 5 year old peer? Have them over and forget to warn them Nolan doesn’t know you have put pants back on after using the bathroom).

We have faith he will get there on his own time in his own way. We plan on supporting him through it all. We plan on trying supplements to help the gut brain connection and brain health to help him have all he needs to re-build or create new neurological connections. We plan on putting him in ABA therapy, Speech Therapy, and then generalize all those skills at home as well.

We love Nolan with all we have. We love him for who he is and what he can do. We are proud of every accomplishment he makes: no matter the size, no matter if it is the first time ever or first time in a long time. We love being his safety zone. We love learning and laughing with him. We love providing him with a birthday party that is so him with out ever having a conversation about what he wants. We love getting to know him and all we can be for him. We worry about him and we want what is best for him.

We hope that even if cannot tell us, he knows