Re: autism spectrum disorders - DS
posted at 6/12/2013 10:30 PM EDT
As you know from my other posts, we recently went through the same revelations with my DS, although at a little bit of older age. Please know your feelings are normal and I still feel them at times. I went through some of the same emotions/reactions you describe. I will say, once I accepted or in ways "owned" his diagnosis, got info through OT and speech therapy, and my own research, I have really been able to better be able to understand my son, predict/anticipate his behaviors and needs in situaions, and be more mindful of life skills coaching. Honestly, it was like a roadmap to my son that I didn't know how to access before. Also relieving was when I started talking to my friends and family about it. I am a Type A achiever also and at first it was tough to acknowledge concerns about him. But, once I did, it brought so much compassion, relief, and the majority of my fears about reactions were wrong. Also, I realized it eased my anxiety in so many situations b/c everyone else was starting to understand him better. And it wasn't a huge touchy feely emotional fest wtih most folks, just a practical conversation of "so here's what's going on." Honestly, EVERYONE knows SOMEONE either on the spectrum, or in EI, or needed speech therapy, or had a motor delay. Once I just put it out there, I realized how easily everyone else can talk about it without it being emotional or critical, and I stopped avoiding people. Furthermore, I was more relaxed doing things with DS. I didn't worry about judgments about my hyperactive son's behavior at a birhtday party or "why can't DS just say hi and be polite to Great Aunt So and So like his little cousin can." Now we know: it isn't about him being out of line, misbehaving, us being "bad" parents, not strict enough, or my own go-to self-criticism before the diagnosis of "it's because I work and don't spend enough time with them." It is just about how his brain works right now, and the therapies are going to help his brain and the way the rest of the world is, mesh a little better. Loud open spaces turn him into a hyperactive, hard to control little guy, but with some OT techniques, we really know how to help him calm his "engine" down in those situations, for example. Understanding that this is not in his control right now nor mine, it is no one's fault, but there are things we can do to re-teach, train, redirect, cope that can significantly improve things over time, has been a helpful way to look at it. All those "autistic" behaviors you mention, so many are about sensory input, and are really just self soothing or self stimulating coping strategies. Once I got more education from our OT, I really exhaled and it helped me not fall into the habit of stigmatizing them.
To be honest, the only irritating response I get is when folks in our family or friend circles don't believe the diagnosis or get on a soapbox about "everyone being diagnosed with somethign." Sometimes they just don't see it and don't believe it "not your DS. He's just energetic. He's just a boy. Not everyone is a talker. He just is particular about his toys..." most likely b/c they don't have all the facts. I don't like having to rehash the symptoms/difficulties and defend this diagnosis that I myself am still accepting. But, no one has ever been critical, uncaring, or disrespectful.
Do I embrace everything anrd champion the diagnosis on my sleeve all the time? No, I am just not there yet. I couldn't accept a friends' invitation to Autism Awareness Day at the zoo with free admission for ASD kids. Just couldn't do it... and I don't know why. I don't have awarenss stickers or bracelets. I don't access the message boards on the autism sites regularly. For me, they are too overwhelming and frankly b/c the spectrum is such a truly broad spectrum, so much of the information out there just doesn't apply to my son. It isn't my son's whole identity, it is just a part of the picture, so maybe that why I shy away from hugely identifying. Maybe one day I will be more public about it, but the first step of just starting to talk about it with closer people in our lives was helpful. Acknowledging to my boss why I was distracted, acknowledging it to my supervisees, friends, family, etc. has truly taken a weight off my back. Their compassion increased, so many helpful stories were shared, and my anxiety decreased.
Just in recollecting some of your posts around concerns for your son and from what you posted here, I wanted to say I see so many positive signs already. First, he has siblings and is already in a childcare setting with lots fo social exposure. Even if he isn't able to fully participate yet, just being there is a huge plus. Second, you were great on catchign this at a young age and don't kick yourself for not catching it earlier. We just got diagnosed at 4 and my son is already making great progress without even the full regimen of recommended treatment in place! It is so difficult to know as a first time parent and so many of the signs are difficult to detect until they are a little older and in a pre-school type setting, it sounds to me like you acted as soon as you had enough questions/evidence. I am not a diagnostician nor do I know your DS, but the fact that it was confusing and there weren't always clear cut consistent signs, in my own understanding of this, are actually potential positives - a lot of good foundations ARE there, just not consistently. It is a spectrum and it is fluid b/c treatment, especially starting young at your son's age/stage, can be hugely impactful. I am not trying to give false hope, but once you start talking a little more to others and start therapies, you will realize this is such a common diagnosis and the room for improvement is huge. Please don't jump ahead to 20 years from now and picture your son still behaving the same way he is today, or conjure up any recollections of older kids or teens you may have known on the spectrum and assume your son will be exactly like them. Every case is so unique and the amount of intervention and therapies available now and at such an early age really improves prognosis and future functioning.
I wish you the best. Please let me know if I can be helpful with any questions/concerns that might arise.