possible ASD... a little lost

[sarbear]

Hello all. It's been SO long since I have posted to MDC, but I'm coming back now to hopefully get some support and help regarding my 22month DD.
She has no 'real' words (she had a couple at 12months), she has some sensory behaviors that seem odd for her age (eats everything- sunscreen, sand, soap), avoids eye contact usually, doesn't ever engage DH or I, or her siblings in any kind of play or activity, when she wants something, she communicates it by taking your hand and placing it on the object/activity. She has an identical twin sister, who appears to be developing 'normally', so it's very easy for us to identify the issues in her that stand out. She is also very affectionate, which I understand is atypical for children with ASD, and she is generally a calm, mellow kid (tantrums are infrequent and don't last long when she has them).

She has an appointment to be evaluated by a developmental ped, but the earliest the center can see her is August. DH and I are sickened by the idea that we have to wait two months to begin to help her if in fact she does have a diagnosis. We have been doing lots of research, and decided to implement the GFCF diet last week. We started the diet on Thursday, and I swear, Friday was one of the best days she has had in months. She actually brought me a book to read to her (twice!), and she played with her siblings in the kiddie pool outside (which she usually avoids like the plague when they are in there). She just seemed more content, more connected. Then today, she had an awful day. She woke up last night and wouldn't go back down for an hour (she does that occasionally), she had bags under her eyes today, she just wanted to be alone with her blankie and her binkie, and she was frustrated a lot. This really confused me. I feel a bit discouraged, I guess I just feel a bit lost and sad. I wonder if there is more we should be doing for her, IF there is anything we can do other than just wait? If you are still reading this, thank you & any words of wisdom or advice would be SO appreciated.

[sbgrace]

It's hard.
I also had a twin situation though they are fraternal twins. It did make my son's issues more obvious as he brother constantly modeled neurotypical. It was also more painful sometimes as it highlighted what he couldn't do or how far behind he was. Andrew is doing things now that are so exciting and sometimes it hits me that his twin was doing them three or four years ago without any work to get there. But still those milestones are beautiful.

It sounds like you have enough information to know she's got spectrum issues. Many spectrum kids are affectionate and my son was extremely so. don't think that's truly atypical. However girls have a harder time getting an accurate diagnosis because they do present differently than boys and the stereotypical views of autism are often based on boys. Hopefully you'll get an accurate assessment. Would some links about this is what autism looks like in plain language or videos showing or online assessment type links be helpful? I've got some really good "could it be autism" type links.

I see no reason to wait on anything if you don't want or need to wait.

Since you know she needs help in those areas I would think about what type of help you want to give her. However, don't feel pressured to do anything now if you're not ready. It's ok to just "be" as you need to/she needs to/etc.

I can make some suggestions to start looking. If you want more information feel free to ask.

1. Floortime might be really helpful to address autism related areas you're seeing. You can do that on your own with some pretty low cost books to learn, yahoo groups, etc. It's good for forming connections, play skills, and the foundations of communication.
2. Is she in early intervention? That is usually free or very low cost and therapists can come and work on, say speech or sensory issues, in your home in most states. In most states it goes to age three so I'd look into that quickly and get what you can out of it. After that the school system takes over and the quality of what you get varies, it's not in your home, etc.
3. We like RDI (Relationship Development Intervention) for autism specific therapy but it's therapist driven more than Floortime and not something you can learn on your own. So it's much more costly. We began with Floortime and then switched to RDI later. I'm fortunate in that in Indiana insurance pays for autism therapies so we are able to afford it and other things (more expensive even here) like occupational therapy. However, I did early intervention until he aged out along with floortime which I learned myself with a book.
4. You might look further into books and websites on sensory integration so you can work on those areas. Early Intervention in many areas provides Occupational Therapy and works on sensory issues.

I guess I'm saying that my suggestion is, as you're ready, act "as if" in your decisions. You don't need a formal diagnosis to know you've got social and communication delays.

I didn't see my son respond to gfcf diet but many kids do. It's encouraging you saw response so quickly. Most of the time it's slower to see because the proteins need to clear the body. So try not to be discouraged by the hard day so quickly. She may also be withdrawing or something similar. Also look into trace contamination issues. Give it some time if it's manageable for your family. If it's not manageable you might look into enzymes as a (not quite the same but still helpful) alternative.
There are so many different causes of autism and so each child will respond or not respond to various biomedical things like diets or supplements. It's truly not a one fits all approach.

[sarbear]

Thank you SO much.
All of that info is awesome, I am going to look into floortime, and hopefully start that right away.
You're so right, the fact that she is a twin makes it somehow sadder I think. I think of her, and how this will affect her life, but also her sister's. And I try not to compare them, but how can you not?
I watched several of the videos on the Autism Speaks website last week. The videos were actually what really made me start to take this whole thing seriously, because I could relate so many of the more subtle behaviors the children displayed to my DD. She doesn't have all of the classic symptoms I have read on the lists over the last couple months (stimming, etc.), so I have been skeptical, but she has so many of the more subtle signs, and I think those things combined with her lack of language is enough to be concerned about.
You're right, I want to go forward 'as if', because I know how important every day is, and I don't want any time to be 'wasted'. She is not in early intervention yet, she has a hearing test Friday, and then we can move on to the speech eval, which I'm sure she will qualify for either way, since there is a definite delay there.
We do plan to keep up with the GFCF for at least a month, I know I can't expect it to work overnight. I'm just coming to the realization I guess that this is going to be a process, she may take some steps backwards before we can go forward.

[kme]

It is so hard in the beginning when you are first coming to terms with the fact that something is wrong. And you want to get right in there and start fixing it! You are right, it is a process. For us, it took a couple years just to get an accurate diagnosis and we tried many interventions - some were helpful, some not so much. He also did early intervention for 3 years. Turns out my son has sensory processing disorder and a language disorder and so we are now focusing on OT and speech but it took us years to get here.

sbgrace gave you some great ways to get started. Floortime is a good, inexpensive thing and you can involve your NT children as well.

I book I refer to a lot is "Overcoming Autism" by Lynn Koegel and Claire LaZebnick. It is a straigtforward book to help in reducing the symptoms of ASD. It is divided by symptoms so you can focus on the ones that affect your child the most.

You are already doing the most important things: you recognized and accepted there is a problem, made an appt to get an eval, and moving forward with EI. Early intervention is KEY. My son made tons of progress and I know he would not be where he is today without it. He is in a mainstream kg class (with an IEP) and doing well. Yes, he still struggles socially and with language. However, he has come a very long way.

Good luck to you.