ADULTS and AUTISM ~
ROADBLOCKS
The pushed aside population~
Yesterday was a tough day I went to children’s hospital yesterday for a follow-up neurology appoinment . I was discussing with the doctor how absolutely amazing Alyssa has been progressing . It is frustrating how there is such a lack of services . He had a social worker come out and talk to us to see if he knew of resources for adults . He met Alyssa and was impressed by her and gave us a few numbers to call . I had mentioned how they have an autism center that seems to have expanded since we had been here last . I read on the website that they follow them through their life span . This was promising information .
One of my main concerns is who picks up her care as she gets older . Alyssa was diagnosed through children’s and had a developmental pedi follow her when she was younger . As her behaviors got better the need to be seen subsided and then at 14 her seizures started and that became the focus . I was hoping that she could pick back up as a patient and maybe get services that way. I want to maximize her potential and I don’t know how long she will be on this growth spurt . As we were leaving he followed us out and mentioned downstairs in the Lobby there is a table set up through the Autism center and we should go down and talk to them . I can ask and find out what they can do for her.
I go over and speak to them explain what’s going on with Alyssa she is standing next to me .
And the lady is listening and says no I’m sorry we only except patients in the autism center until age 16. I explain that I read they follow them through their life span and she said they do but only current patients . I tell she is still a patient we just hasn’t had a need to come the past few years . She states that if you are not seen for two years then you are no longer a patient . Pause ~ I am internally losing my shit , she then tells me mass general has an autism program that services adults but there is a really really long wait list but I could try to call them . Deep breath , she then says let me switch with Bill he knows more about adult services … Bill had nothing to useful to say . I honestly can’t recall his words , I was fighting tears and just wanted to get out of there. Thanks for nothing unless your looking for housing or work then there’s nothing to talk about no pamplets no resources that’s a wrap.
Of course I leave with tears pouring down my face . My husband is like what happened . What’s wrong ?? Nothing ~ everything … Are you seriously telling me my daughter doesn’t matter because of her age which means nothing Because her level is not even near an adult . She is not worthy of help because she is 22 . She literally is cast aside . Even though she is learning at a rate she never has before . She is saying words . She is repeating and trying to say so much . She is understanding and remembering like never before .! It is not right .
I of course feel like the worlds worst mother – If I kept up with coming into Boston she would have access to services and specialized health care she would still be a patient here . Everything I look up is like -takes patients up to age 21 . Is there some damn magic pill we missed at age 22 !?
It makes zero sense . On top of all that we are not looped into to the newest information . There is so much new stuff happening , genetic testing , medicating Symptoms, all the research and information . They quickly reassured me that there is no medicine for autism 🙄 no kidding lady I was just saying , I want all the relevant information .
Alyssa isn’t even technically diagnosed with asd . It wasn’t even called that when she was diagnosed . It was just autism no levels even …
This is just incredibly frustrating
She is finally at a place where she can learn and no one can help her . I of course work with her but it’s not the same . You would think living near Boston with all the medical advances and allegedly one of the nations top children’s hospitals there would be an abundant of resources. For all ages ; I’m sorry she was born in the wrong year . Autism was not as well Known then I feel like I’ve I have failed her , that the system has failed her . She deserves better. Believe me 22 comes faster than you think . If you are linked in with specialists and doctors make sure to stay their patient.
Autism adventures with Alyssa 