A word on high functioning autism
Well meaning people, acquaintances, friends, family members who are trying to understand frequently ask me "DS is high functioning- not that bad right? Like Aspbergers?" It is difficult to formulate an answer on the spot but if it is a situation where there isn't much time or interest I just say yes. This is what I wrote to a work friend from the group I regularly eat lunch with when she asked me about it earlier in the day. My sense in general was a sort of, idk, lack of awareness, he LOOKS normal, maybe she just doesn't discipline him enough. I usually just content myself to eat and limit the conversation to recipes and weather.
"Hey! I didn't know how to answer today about DS. So its complicated, he's complicated, and my feelings about it are complicated. I've known something was off with him since he was born and the mommy friends with babies from that time who's kids are his age now- they can look at where we are now and say yeah you knew. It just took a long time to get a diagnosis. He's high functioning, sometimes he seems just like every other kid- almost, but I don't know if everyone sees there's often something a little off. In school he just can't function at all, he just can't make it through the day in a normal way and come home with all the things he left with. If his teacher, the principal, and the special education teacher were left in an alley with him I think they would...you know. I honestly don't feel he is safe there anymore based on some of the comments and looks I saw between them. At home he is super, super, super difficult- and sometimes, when he is regulated, when he is "with it" I can enact punishment, discipline and time out- taking away privileges and that is fairly effective. When he is dysregulated, it is like when our special students are falling out on the floor, I can't connect with him- obviously he's like turrets psychotic break kid and there is no enacting discipline its just weathering the storm. He gets violent- I have to try and drag him up the stairs to his room. Its horrible for his brother then too. This week DS wanted to wear shorts every day and we had like a complete meltdown every morning with him tearing off his clothes and screaming at me and running around the house in underwear at like 7:35 refusing to get dressed and calling me a B- it was all I could do not to like have a complete nervous breakdown as I was walking into school every morning saying "hi" to everybody 10 minutes late. I mean I can't even. All my sick days are IEP meetings and specialists and suspensions. He's failing everything. I went to family court to get him qualified for in home counseling and TDT and it has barely helped. He gave me my first hug, I mean like real hug, like coming up spontaneously and hugging me with a real squeeze a few weeks ago but after we adjusted his medication to try and get his executive function in order he hasn't said a word to me that isn't a curse word in two weeks and hasn't been eating and has thrown most of his food, my food, and his brother's food on the floor. He's not "that bad" but he's just bad enough that my home has turned into a war zone, I don't know if I'll ever get another hug, and I will be really lucky if I can manage to fight fight fight and get him an education that doesn't involve moving and uprooting my tiny family and losing what little support network I have. That is if I don't get fired for having to leave work all the time to go collect him. Sorry, I know that's a huge dose of reality I hope its OK I just want to catch you up all at once versus one sentence at a time over the course of several weeks at work. Thanks for being my lunch buddy and I appreciate it and now you'll know how much I appreciate the carbs. :-S"
I think it summed it up pretty well. I am at a similar place right now. His IQ is high (yay) but my 9 year old close-fisted punched me in the face last night. He has been taken out of class over half the days in school for being unable to cope and his report cards are a jumbled mess of As and Fs. This is just one season and it will pass, I will get an IEP in place, I will find the magical combination of therapy, sensory interventions, and fairy dust that works to help him deal with the world. I won't always be hit or cursed at or have to fight about clothes. But sometimes this is where we will be. So I can't speak as an expert on ASD or PDD NOS, just a parent of a boy that I will do anything to save, but high functioning ASD is enough to keep anyone in our tiny family from living any kind of a normal life and keep us always on the precarious knife's edge of calamity.
Book lovin librarian nerd mama to Caleb 6/06 and Aiden 4/09: and 1 angel 11/07. "No one cries alone in my presence."