Autism questions

Spockles

Hi Everyone,

I'm concerned that DS might have autism. We've started the evaluation process with the school district. He had his initial evaluation last week and a speech language pathologist is coming out to evaluate him this week, a hearing test next week and then a gross/fine motor development teacher will be coming out the following week.

I'm really worried that he will/does have autism. His speech is really lacking and words that he was saying before, he no longer says them. He just seems/acts "different." It's hard to pinpoint what it is. He doesn't act like other kids that are around his age. He often goes off by himself when around a group of other kids his age and looks so intently at weird things like a window sill or at his gym class, he likes to look at the nuts/bolts that hold the equipment together vs. climbing around on the stuff.

So my questions for parents that have a child with autism.

1-How old was DC when they were diagnosed?

2-How long of a process was it?

3-What were the signs/symtpoms that you experienced?

4-What if DS ends up having autism, then what? What happens after a diagnosis?

Thanks so much!

skittles_123

What you are feeling is normal and you are doing the right thing by getting some answers. Looks like he is only 20 months old-great job on spotting this early!

My ds was dx by the school system with Aspergers a month before he turned three and full blown autism by a developmental pediatrician when he was two weeks a way from three, We accept the second dx, as it is from a medical professional and he had language delays, which is not common with Aspergers. 

My ds however had been showing signs since he was very young-probably around 20 months old is when red flags started to pop up and teachers started voicing their concerns. He was our first and we thought we'd give it some time to grow out of it and plus our pediatrician at the time was not concerned. We were very very wrong and we lost all that time at early intervention.

I don't know which process you are asking about, but the school system and developmental ped's were both fairly quick, within a month we had a dx. We went out of network for our developmental ped, which meant we only had to wait 2 weeks for an appt. In-network would have been a 6 month wait.

Symptoms, well as you will hear, every child with autism is different. But for my ds, speech delays, lack of eye contact, flapping of hands, fine and gross motor delays, echolalia, not responding to his name, playing by himself, and not following directions were our primary symptoms.

After dx, they will probably reccomend a set of services for your dc, depending on delays, it could be a combo of ST, PT, and OT. I would also check out your insurance to see if they cover any of that as well privately, if you are not satisfied with what they have to offer. You are going to be your dc best advocate, don't be surprised if you have to put up a fight to get what he needs.

There are some alternative behavioral therapies, floortime, ABA or a combo of those for a kid as young as yours. I would look into that as well.

This is a very tough road, and is very emotionally diffifcult at first. Please allow yourself to grieve it you do indeed get the dx. No matter how much preperation you give yourself, when a professional tells you something is wrong with your child, it hurts like h***.

We have all been there, and it does get better. Please feel free to post again any questions, feelings, etc. This is probably one of the few boards that you will not get flamed . The ladies here are wonderful!

lite-bright

Hi there!

We're having my DD1 evaluated for ASD as well. We don't have a diagnosis yet, but I'll answer from what we know so far.

My DD1 just turned three in January. I've had concerns about repetitive play for awhile -- since she was a baby, in fact -- but my pedi assured me that "kids like rituals/predictability" and it was NBD. She was pretty typical at her two-year appointment; but by her three-year well-check I had some major concerns and my pedi agreed that we should have her evaluated, with Asperger's suspected. 

I think the length of the process depends on a lot of factors, including your child's age and the resources where you live. I started the wheels rolling in November because I was concerned about her speech quirks, so we started with just a private speech evaluation. That appointment was in December. Our speech pathologist recommended a developmental evaluation, which depending on where we chose to have it done, could've taken 3-4 months or longer (a LOT longer; my pedi said some local places have wait-lists a year long) to actually get in for the appointment. We found a place referred by our Children's Hospital who could get us in in about six weeks, which was also in-network for our insurance. Those were private evaluations to get a diagnosis. Our school district will not give an actual diagnosis, they'll just determine whether she fits their guidelines to receive services. 

So now we're in March, have had the private evaluation and the district one is this week. We expect to have a diagnosis, determination of services from the district, and treatment plan within the next few weeks. 

Signs: for us, extremely repetitive speech (she usually repeats both the last phrase someone says, and repeats bits from TV, movies and books). Her spontaneous speech is generally formulaic and observational, not abstract/imaginative. Her inflection is very odd and sounds robotic, not conversational. She does very little creative play. She is very affectionate with us and her younger sister, but doesn't seem to "get" how to interact with other kids. If a group of children in her toddler class are doing an activity, she's the one off on the edges, wandering around or throwing leaves. Other times, she just giggles at what other kids do as her usual form of interaction -- she very rarely speaks to another child. Her teacher told us that she "doesn't seem to process things like the other kids."  

If she ends up getting diagnosed with an ASD, we start therapies. Definitely speech, probably occupational therapy, and I honestly don't know what else. My impression is that there are a lot of possible therapies to try for the social/emotional/play piece, but not a lot of hard evidence on what actually works. Probably because the severity of symptoms varies wildly across the spectrum, with different things working better or worse to draw different kids out. My DD1 is very verbal, she chatters constantly -- it's just not usually about things she thinks/feels/imagines, it's recycled from various sources.

Part of the reason to get her privately evaluated is that along with the diagnosis, they will help us work up a treatment plan. Then we'll look at what services, if any, she will get through the school district and decide where we need to supplement with private services.  

HTH!

MirandaHobbes

Hey there- send me a PM if you'd like to talk candidly about what school district you're working with; I'm also in Minnesota.

DS was about the same age as yours when we first were evaluated. I think we started the process around Thanksgiving and had our school diagnosis by early January.

The biggest concerns for DS when he was evaluated (at 19 months old): lack of speech, poor eye contact, disinterest in playing with other children, high interest in things like lights and other "non-toys", and mechanical "play" with toys (e.g. he didn't play typically with toys, didn't pretend play at all, didn't engage in dramatic play). He sometimes walked on his tip toes. To be honest- none of these things sent off any alarm bells off for me- DS is our first child, we had no others to compare to. I laughed when they told me he didn't play with toys typically. It has taken me a long time to figure out why that isn't normal. So it's great that you're getting him evaluated and following your mom gut.

After our diagnosis we immediately began in-home therapy about once a week with EI services. After a few weeks we began EI services in a center-based setting two days a week (2.5 hours a day). This was hard for us; it meant putting my then 20 month old baby on a bus and having him bussed back to daycare without my involvement. He did great though. We also started private speech therapy and he received speech about once a month at home through EI, in addition to what he received at the center. We continued on this path all winter/summer. By fall he had made marked improvements (speech being the biggest one- by the next fall he was speaking in 5-6 word sentences and, but-for the ASD diagnosis, wouldn't have qualified for ST anymore). He is engaging and sweet and everyone loves him. But a lot of the stereotypical ASD traits started emerging. I started to notice how he really doesn't play with toys at all- he just manipulates them. He isn't scared of kids but he doesn't engage with them. I could never take him to a play date because I'd spend the whole time trying to keep him in the one room. On one play date he spent the whole time with the other mom helping her with laundry (as I said- everyone loves him- the adults that is!) As he got closer to age 3, his speech became more repetitive echolia and he gets stuck on things like the weather or time of day (He'll repeat "it's dark outside" like 10 times a night). It was at this time that we knew a medical diagnosis would be more accurate. That process took about 6 months from the time I made the appointment with the dev. pedi to the diagnosis (PDD-NOS). The doctor recommended a well-known inclusive child care setting and additional private therapy.

Now we're in the 3 yo special ed program at the school (graduated from EI). He gets bussed from his inclusive daycare (70/30 typical to special needs) to get his school-based therapy about 10 hours a week. Soon we'll be starting a new round of private OT and ST- the OT is new, for his tip-toe walking and some possible oral fixation things (he has a rabid love for suckers and his pacifier).

It's been a journey, for sure. You're on the right track and realize it'll all work itself out. It's hard, but rewarding. I'm just incredibly proud of my DS for all the strides he's made. I can see the fear in his eyes when he meets a new situation, but he is so brave and will carry on. Again, feel free to PM if you have more questions!

elli2010

DS1 was 2 years 4 months of age when we got his official diagnosis. He is currently involved with EI services (twice a week with EIS, twice a week with OT and twice a week ABA - ABA is paid by our insurance) and will be starting preschool come the fall in an autism specific classroom. Our official diagnosis came from a psychologist who did his assessments not our school board. Our total assessment time with the psychologist was 2 months from beginning to end. We are an exception though, I know many wait months for an assessment.

 Our initial  concerns were his regression in speech (he lost his few words at 15 months of age), anti social behavior when around other children, extreme daredevil behavior (this turned out to be a SPD) and his temper tantrums that would be violent for him (banging his head on the floor, screaming for 45- 60 minutes etc.

 He was originally assessed by EI (at 2 years of age) for a speech delay and they are the ones that noticed further behaviors that were consistent with autism, shielding/blocking so he doesn't have to look at people, inability to play appropriately with toys, and repetitive behaviors (spinning, opening and closing doors - he could do this for hours if we let him). The reason they didn't assess him earlier was because I was not ready to acknowledge an issue. I thought that everything I was seeing was because his Daddy had deployed and he was trying to deal with this in a way his little body could handle. DH came home from Afghanistan and nothing changed, I then agreed to an assessment and I have come a long way in my acceptance of everything.

 DS1 has come a very long way in the last 6 months. He is responding well to therapy, he still doesn't handle changes well  and the tantrums are still bad, they are just fewer. He has some language but not much and we have actually just recently purchased an ipad for him to help him communicate with us, he's loving it!! He actually said his little brothers name for the first time the other night in response to a flashcard of his brother on the ipad. I cried.

DS1 has always been an affectionate little guy. He loves hugs, loves playing physically with his daddy, loves being tickled and tossed in the air and wrestling. Again, alot of that is his sensory processing stuff but he's a happy, fun little guy and we are so blessed. He's just learning now how to give kisses and I love it!

 

randax5

My son was diagnosed with PDD at the age of 2 and a half. I had the school system evaluate him and the process was quick and he was placed in a non-categorical kindergarten class. in the morning. He received speech and occupational therapy. Symptoms are easy to see: no eye contact, no speech, flapping hands, and a passion for doors (repetitive behavior). That was 15 years ago, my son is graduating high school this June and headed to Syracuse University to study aerospace engineering. So even if DS gets diagnosed with Autism, it is not the end of the world. You need to do everything you can to get him/her early intervention and everything will be okay.

Randa