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Looks like we're back again - high functioning autism?

post #1 of 5
Thread Starter 

We have had a really long run of good times with DS, now 3.75yo, and frankly, I needed a break from worrying about everything. He is still overly anxious, but he was managing okay, and a few things we tried were helping. But then it started heading downhill again, so we went to an evaluation with a child psych/play therapist to see if we could get him some help coping with anxiety.


This place is really well known. It took us 3 months to get in. They were incredibly thorough. Her preliminary diagnosis is high functioning autism.


In a lot of ways, it makes so many things make sense (especially from his baby-toddlerhood), but in many ways, it doesn't fit at all. He's extremely imaginitive, compassionate, makes great eye contact, draws my interest to everything, seems to want to be with people, is empathetic to a fault. Apparently, he put on a really good show for her, not making eye contact at all, repeating jibberish and the like (DH took him to the eval), but I know she was basing her dx on what we told her more than on his behavior. She doesn't really want to use a label yet until she's spent more time with him.


I have to admit, I feel so blindsided. I felt like we had put autism to rest, and I was totally not prepared for that. Anxiety, I was prepared for. But this is an entirely different a-word. I know that it's not the end of the world, and also that it's just preliminary, but it really knocked me for a loop.


And now I'm seeing everything as a symptom. He's having an especially hard week with the anticipation for Christmas and he has totally relapsed into some of the old behaviors. He's playing with my hair constantly, repeating phrases from books or that he's heard his sister say, wandering about aimlessly, throwing raging tantrums once or twice a day, talking gibberish while running around in circles, startling at even moderately loud noises. I remember these feelings back from when we were first starting to worry about him almost a year ago, and I hate feeling like I'm looking at everything he does as disordered.


I received a lot of really wonderful and understanding support when I was here before, and I'm hoping that some of you mamas can tell me a little bit what to expect, lead me to some good resources that might help out, etc. Should I be having him evaluated by an autism team (there is a really great one at the children's hospital here), or is the child psych enough? Should I start looking into OT? What about school - he was going to start preschool next fall. I was looking into montessori, is there something else I should consider?


This all feels like totally new territory for me. I really could use a hug and some words of assurance right now.



post #2 of 5

My DS (born May 2007) has similar qualities as your DS, and he has an autism dx.  He also is very friendly, initiates play, brings me things, makes good eyecontact (50 - 65 percent of the time), he cares about my feelings, laughs a lot, has a lovely temperament for the most part...he also speaks in jibberish, is developmentally delayed in nearly all areas, stacks cans, wouldn't have a clue if someone was making fun of him, and has a predisposition for trains. 


I accept the dx mostly because of his speech, that he's always taken my hand to get things out of his reach, he wasn't an especially smiley baby, it takes him a long time to follow a pointed finger, that sort of thing. We started out with Child Development Services, they are the ones who urged me and paid for the evaluation from a Developmental Pediatrician, after that we were eligible for SSI, I quit my job and was offered preschool, PT, OT, and SLT which have been wonderful.  I feel very fortunate that people in the community care about my DS, he absolutely loves school---but it would be a mess for him in Montessori, he needs way more guidance, he has a 1:1 teacher each day he's at school and has been even happier now that he's transitioning into the Special Purpose room (as opposed to the classroom with the peer models.)


Lots of hugs.  You are not alone, I know I'm not alone when I follow along the highs-and-lows---there are many of them.  As for your DS's anxiety, it has a good chance of decreasing once he gets the skilled help or into a Special Needs preschool where they understand your child's needs and where he can get therapy.  Now that you have a dx (I think that'll be the only one you need) you can get case mgmt which will provide you services.  I'm not sure where it's offered in all areas, mine is through a county service under the State Dept of Health and Human Services (when I started, it was under the Dept of Education, which I prefer, but whatever.)  GL!

post #3 of 5

My DD, 5 next week, is high functioning on the Autism Spectrum. She also has many traits you describe in your son. I feel your pain at the diagnosis and the confusion it's brought about in you. It's hard reconciling it. My DD is very affectionate - almost overly so - loves to tell jokes, has a great sense of humor, etc., etc. But she fits onto the Spectrum in other ways. Gross/Fine motor, social awkwardness, sensory issues, freezing up when she gets overwhelmed, rigid in her play especially around imaginative play, echolalia, etc. I know it can be hard with a high functioning child to "see" the diagnosis as a benefit to your family. But knowing is good. You can access the services he needs, pick up supports in the areas where he struggles and help to set him up for success in school and in life.


It's certainly a mixed blessing for us. Here in BC, being on the Spectrum officially means access to early intervention funding from the Autism Funding Unit of BC Ministry of Children and Families. it pays for all the OT, SLP and behavior consultation she needs to put her on the same level as her peers. But it also means she's officially considered a disabled person. That freaked me out completely. I don't see her this way at all but the government does. I mean, it's good because it means tax credits and stuff, but it's just ... not right to me. Not right at all.

post #4 of 5

Just wanted to offer a hug. We're on the same journey. DD just got an ASD dx last week. Like your DS, it seems to fit in some ways, yet not in others. It's been both a relief and a shock to get the dx. For so many years, I've second guessed myself and had professionals tell me that there's no way she's on the spectrum. I think the testing (ADOS in our case) really highlighted DD's challenges. She (and the whole family, really) has developed so many coping strategies over the years, that a lot of DD's ASD traits aren't apparant at first glance.


I don't have much to offer in terms of specific resources or strategies...I'm still grieving the dx and just trying to get through the holidays before really taking any steps forward. I did contact a local support group and order the 100 Day Kit from Autism Speaks. I know a lot of people don't like AS as an organization, but I felt that it was at least a step I could take in the days after the dx to begin to process it. I'll see if it has any helpful information and leave the rest.


Another hug, mama. Thinking of you.

post #5 of 5
Originally Posted by InMediasRes View Post
 She doesn't really want to use a label yet until she's spent more time with him.


I know it is hard to be in limbo but I think you should pay attention to what you've just written here. The reality is that this person has spent very little time with him. And, even when she does for some kids on the milder end these diagnoses are far from clear cut at his age.


I think you are absolutely doing the right thing to get him help with his anxiety and to look to help with sensory stuff if he's struggling there.


I know it is easier said than done, but my suggestion is to focus right now on the symptoms that you know exist and look for solutions that can be found in the moment now. Try to keep yourself from projecting too far into the future about what a diagnosis that is not yet certain will mean. I have seen preschoolers who were very quirky, anxious, struggling who with the right supports no longer meet the criteria to be diagnosed. And, I've seen kids who were quirky, anxious and struggling who remain on the spectrum but again do very well. So, one day at a time and all that. Give yourself permission to take breaks from thinking about it. Hopefully once your son gets seeing the therapist more regularly  you will have a better sense what the plan will be.

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