I'm a parent to a child diagnosed on the Spectrum

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AnxietyHere
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24 May 2013, 1:22 am

Hi Group! I'm here to get some information and I feel this might be the best place to get it rather than other moms of kids which is what I've been doing for some time. I need a different perspective. My DD just turned 3 last the end of March. She was diagnosed with moderate-severe autism the January before last, so it's been over a year. We put her in Early Intervention as soon as we got the diagnosis (since that was kind of the golden ticket) and she started receiving services and still is up to now (however now they are through the local district, she aged out of E.I.). I just have doubts of her diagnosis. I first couldn't believe it and was shocked to hear it. Then I started to believe it. Then, I started having doubts. Could have been parental denial, but many (if not all) of the professional therapists working with her expressed doubts as well without me prompting or asking their opinion. Even her doctor at our most recent visit a couple of months ago asked me if I was sure of the diagnosis (she works with many kids on the spectrum) I truthfully told her no. My husband even at one point began accepting the diagnosis, which hit him hard, but as time goes by he's not sure either. Either way, I'm still getting her services because if in fact I am wrong I would feel terrible if I didn't get her the help she needs. Whew...sorry about all of that background...

My question is, since I am operating on the notion that she is on the spectrum, I'm hoping to get some feedback from adults who were once diagnosed with moderate autism and if they improved, how are they functioning today? I will safely assume that most if not all members on this forum have a diagnosis, but if any lost there diagnosis, how and why do you think that happened? If you are still diagnosed, what are somethings I can expect? I know I am asking such general questions for what could be a million answers seeing that we are talking about a spectrum, but I'm just so worried how my little girl will end up...I don't know what to expect (and this is a part of my anxiety, not knowing what's going to happen in the future). And It may seem like I'm too concerned at an early age, but years go by and before you know kids are adults. I'm not expecting a crystal ball, just some insight, feedback, advise on how to maybe approach my 3 year old so I don't ruin her life or break her spirit. I'm NT and although I do understand some of her anxieties because I have them as well, I just want to make sure I'm not setting her up for failure. Advice from younger adults is welcome as well. Thank you in advance if you got this far, I am obviously in need of quality information and I felt this was one of the best places to go.



Feralucce
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24 May 2013, 2:41 am

This is not shameless self promotion, but I am in the process of writing a series called "Care and Feeding of Your Aspie" on my blog...

http://wayoutonthecorner.blogspot.com

I hope it helps... it is an ongoing series


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FalsettoTesla
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24 May 2013, 7:56 am

Hello AnxietyHere.

I'm 19 and recently received a diagnosis of autism. One might make the leap that I must be 'mild' then, but looking at my childhood development, I was most certainly not. I was communicatively delayed a lot (didn't speak at all until quite late, never used gestures to communicate). I was also delayed with most practical skills (motor milestones were delayed, I couldn't dress myself or take care of my personal hygine until I was 10+). I didn't learn to read or write until I was 10.

I fit the profile for moderate-severe autism (if you want to use those terms, I don't really find them very useful) a lot better than the 'mild' profile. I wasn't diagnosed for a variety of situational reasons, my mum had no idea what typical development was like (she was a very young mum, and nearly my whole family are neurodivergent in some way, my brother has ADHD, my cousins have various dxs), and was dealing with her own issues at the time (she's dx'ed bipolar type 1 with psychotic features).

However, despite early delays I'm doing pretty well for myself now. Obviously I still fit the criteria for dx as I've recently been diagnosed, but I attend university. I have some friends, and a romantic partner. I couldn't live alone, because of my executive dysfunction and lack of self-care skills (mostly remembering to feed myself, and ability to do the things necessary to maintain a healthy home environment). But I'm happy, and doing most of the things that people in my peer group are doing (albeit slower, less and with my own approach).

It must be difficult, the fear of the unknown for your daughter. What is she like? You haven't told us much about her. What does she enjoy? What kind of skill set does she have? Can she talk? Can she communicate her needs?

As you've said, the spectrum is wide, but it's almost impossible to predict where any three-year-old will be when they reach adulthood, and with a child on the spectrum it's even harder. To the point where I think while you should keep the future in view, the more important things now would be practical skills for the present.