New here and new to ASD

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My lo just turned 18 months and we have had some concerns about his development for about 6 weeks. He is the youngest of my 5 kids and my dh first child. When I googled some of the things he does, I came across autism as a possible reason. The more I read up - the more I am convinced that my son is on the spectrum. We have taken him to his pediatrician who is completely useless, didn't listen to anything we said, thought grunting while having a pooh was communication and referred him for hearing tests because it would "open a whole new world to him". Because he is not open to the possibility of ASD, we have to wait until after the hearing test for further referrals. Unfortunately the hearing test will not be until the end of the year. So....

I called our regional center and self referred my son down there for testing. We met them on Tuesday and they did a number of assessments including the MCHAT. We were told that he is developmentally delayed but has a lot of red flags for autism. They will test for autism specifically but not until he is over 3 yo. We were told he is at 12- 15 months for everything but his cognitive abilities which is above 18 months and his social which is 7-10 mos. They are sending the report to my pediatrician so hopefully he will take us seriously.

After reading this board, I am not sure where he would fall on the spectrum. My lo in a nutshell:

1. He speaks but not like a NT child. He doesn't label things but says complete sentences. He can occasionally use them in the right context though not always (For example if he puts the right shape in the sorter he will clap and say good job - but he also runs around and babbles goodjob, goodjob, goodjob for no reason). He says things like I did it, I'm gonna get you, Big Boy, Good Job, What is it. He has great pronunciation. He rarely says Mama or Dad but he can say them.
2. He is a toe walker
3. Some but not much hand flapping,
4. He doesn't spin things or line up toys but has a need to touch (rub) everything with his index fingers. He loves UPC symbols and words mostly and will flip things over to rub the UPC. He loves the WII remote more than any toy we have ever tried. He likes to hold the WII with one hand and flip the string on the end bank and forth.
5. He rarely looks over at us when we call his name but will come running if we sing the theme song to Sponge Bob.
6. He has never brought me anything to show me
7. Never asks for food or drink
8. Never followed a point when I try and show him things.
9. He has little interest in new people or kids but will glance at them once or twice before he goes back to his routines.
10. He throws himself backwards onto the ground when he doesn't get his way or you tell him no or sometimes takes his fists and bangs on his cheeks when he is upset. Luckily he is rarely upset.
11. He will interact with us a bit but only for physical games like patty cake, head and shoulders, horsey, peek a boo, itsy bitsy spider, or rough house tickling type stuff.
12. He seems to have a high pain tolerance and can walk straight off the sofa and land on his face without a whimper.
13. He love for us to read books to him and loves to kick the football (soccer ball)
14. He absolutely loves anything slapstick (if you purposely fall over, bonk yourself on the head and pretend to be dizzy or pretend to trip and fall he rolls with laughter). He laughs when you fall accidentally too or will laugh when he sees you crying. He actually laughs a ton and rarely cries for real.
15 He doesn't seem to mind me holding him and giving him hugs and will sit on our laps for TV or Books
16. I haven't noticed any sound issues (doesn't cover ears or flinch or cry when he hears loud noises)

I am sure I missed out on a lot of things he does but those are what I can remember at the moment. I don't know where he will be on the spectrum once we get in for an asd assessment but I am 99% sure he is on it somewhere. For now I don't know what to expect, where to go with all I am learning and how to help my ds be the best person he can be. The regional center is sending me a letter setting up a meeting to do some sort of IFSP plan. Not sure how long that takes and I would love to know what we can do now.

We keep thinking that if he would just interact a bit more, the rest of it would come up to speed really quick. If anyone knows of any more hand/physical games to do with an 18 mo they would be appreciated. He seems to learn new words when he enjoys the activity around them. I understand he will never be NT, I am ok with that. Differences are what makes life interesting. I would like him to be able to function independently some day and communicate to the best of his ability though. Other than that I just want him to have a happy fulfilled life.

Anyway thanks for letting me ramble.

Stick around, and Welcome,
Sounds like you are quite an observant and attentive person. Your son is lucky to have you.
The UPC code (well the list but primarily the UPC code stuff) hooked me. I think you most likely have it right and I'm glad you found this website. Make use of it, make use of the people here - a very good and supportive network.

One caveat:
Some of us are blunt, opinionated, or may sound demanding.
Take everything with a grain of salt, but realize that in every answer is an ounce of insight.
Wait. That sounded like a command. I've been told to stop doing that.

Let me rephrase that to be socially correct:
I suggest that you consider everything posted to you, or against you, with a grain of salt. It may be helpful to remember that when you read any post here (positive or negative) there's usually something important to be gleaned from the content, the context, or even the basic interaction.

Best of luck! We'll be seeing you around I'm sure!

I say don't let worry keep you from enjoying your little one as you go through the process of diagnosis and planning for the future. Those first few year are so very precious for all children.

We were also told to wait till 3 years old. The problem with that is that it can often take over a year for all the assessments and diagnosis to happen. Then you've wasted valuable therapy time. I'm not sure what age therapy is recommended. We started ABA therapy at age 4. But, you can always go to a private assessment centre.. Provided they have them in your location. Are usually quite pricey though.

Early Intervention is the key in my understanding. Hey, there are often playgroups for those waiting with some developmental challenges for infants. Have you looked into any of this?

The first rule of pediatrics is Listen To The Mother. It's also the second and third rule (as told to me by a v experienced pediatrician). If yours doesn't listen to your concerns then get yourself another. Whatever your son's issues, he won't be helped by a doctor who doesn't listen to his parents, who after all know him best in the world.

Have you not been offered any therapy because there is no diagnosis, despite there being recognised delays? I would have thought it might have been useful to get therapy aimed at those areas where he is delayed, even while you wait to see what the overall picture is. I can't speak from personal experience though as we didn't get a dx until after 3. I do wish we had realised earlier there was a problem though - in hindsight my son showed quite a few indicators, a bit like yours. My 3 year old has a speech delay and self harms a bit, and is very controlling, but is a charming, social boy too. He has some sensory issues (vestibular, touch) but not like any described in most ASD books. I only say this to point out that ASD is a broad spectrum and most kids show bits of the picture rather than the whole thing.

Bujuessa, I'm amazed that diagnosis can take a year - how come? Here it took a few weeks - there was about 6 weeks of waiting once we had been referred to the child devt service, then a full morning team assessment, a separate appt with a pediatrician, then because they weren't entirely sure, a couple of home visits to see him in a different environment.

Anyway, I wanted to commend you on picking up your son's issues at such an early age. There will be lots of things you are able to do with him to help him. I was recommended Tony Attwood's Complete Guide to Aspergers when we were newly diagnosed. It is in lots of libraries. I found it very helpful for a good overview of 'ages and stages', ie to get a sense of how my son might change as he gets older, plus of course some ideas about what to do to help him.

Hi and welcome.

It does sound like your son has many of the red flags.

Regarding #1, sounds like your son has a lot of what is called "echolalia." Basically instead of using his own words, he's using what he's heard in the past. The "good job" he's saying is probably something someone said to him once when he performed that task. For example my own son will say "are you ok?" when he trips and falls, obviously that's what we say to him when he falls.

Out of curiosity, how does he communicate his needs? My son used to just take someone by the hand and lead us to the refrigerator or pantry when he was hungry.

Where do you live? Services are going to be different depending on your country, or even state.

Anyway as you probably already know for a diagnosis of ASD you will need to meet three critieria.

1. Language delay
2. Repetitive behaviors
3. Social delay

Based on what you said your son meets all three to some degree. My own son does not do any of the "typical" things I've read about online (rocking, handflapping, toe walking, that sort of thing) but he recently turned three and does not have much communicative language. He can label tons of stuff and has recently started asking for wanted items. In play group or day care, he does not acknowledge any of the other kids at all. His only real repetitive behavior at the moment is obsessing about numbers.

My son has the autism diagnosis. They are saying moderate. However I am an American living abroad so there may be some other things going on. Just remember that these diagnoses are not the end of the world are are merely labels to help us better understand and help our kids.

There is a thread stickied at the top of this forum for parents of classic autism/PDD-NOS kids, as this board is primarily populated by Asperger's folks. You might want to check it out.

Good luck!

Hello there!

Sounds like you are doing a great job detailing behaviors. One thing that you may have already discovered is that pediatrician's generally are REALLY in the dark when it comes to high functioning autism. I remember that my son's pediatrician performed this test and then ruled out Autism;

She called his name very loudly and he looked at her (yay!), and then she pointed to a huge space shuttle on the ceiling of the dr office and said look at the ship. When he did look at it she said, "He's not autistic". Not long afterwards, he was officially diagnosed with ASD by a pediatric neurologist.

I remember telling her, "ok, you're probably right but I'd like an ADOS evaluation and a referral for a sensory processing evaluation with an occupational therapist just to be thorough". This she did but would not have suggested if I hadn't been prepared with exactly what I wanted/needed from her.

I would recommend that you call your health insurance company (if you live in the U.S) and find out about your benefits for speech, occupational and physical therapy. These therapies gave my son a voice which has changed so much. I would also research an government laws and or services such as ECI. I will admit though that my little guy saw the ST's with ECI for 8 months before I finally took him to private therapy. ECI often cannot provide enough hours to help that much (at least this is what we have found).

Also, if you do private therapy, definitely do research and request an experienced therapist! I mistakenly thought that OT's were OT's but after wasting money on one OT I learned that it's not true. Just my two cents!! !!

I think the critical piece for early intervention is developing communication skills (starting with talking at all) so, while not delaying would of course be preferable, I think you are actually ahead of the game.

I'd agree that the things you list look like spectrum issues: as far as where your child is, every child (and adult for that matter) has a unique spot on the spectrum. The testing should help you figure out which things are most important and how to address them. I would make sure that whatever assessments your child gets, he also gets a speech assessment.

Sounds like it is very difficult to engage your son socially; I know a lot of parents who have had success starting with their child's special interest (is his bar codes?) and moving outwards from that. Maybe invent a card game out of cut-out UPC codes, something like Go Fish? Learning to follow rules, take turns, and watch what other people are doing are all excellent skills that you can teach just by playing a game. Some kids are really resistant to game play (my son is 11 and still really struggles with winning/losing) so if that doesn't work, maybe try a sorting game, or pointing them out in the store and trying to teach him to look where you point.

You can also repeat phrases when they are used correctly, e.g.: "Wow (Child's name,) you DID do a good job! You put the block in the hole, nice work!" and ignore them when the phrases are random. (This is a super-simplified version of what ABA does, offer rewards for socially appropriate behavior, ignore behavior that isn't appropriate.)

Thank you all for the welcome.

My son doesn't really communicate his needs. He would starve if we didn't constantly offer him food and drinks. He has just started bringing us books to read. He will take our hand and put the book in it and then climb into our laps and wait. If you don't start reading it, he head buts us.

We were offered services, still waiting for the letter and to set up some sort of meeting to put a plan in place.

Our problem is we are in the middle of nowhere. The therapists will have to travel over an hour to get up here so not sure how often they will come. We live in the mountains in California. I would love to move somewhere that has great services for kids like mine but unfortunately, it just isn't possible. Aside from lack of funds, my 9 yo has severe environmentally induced asthma. This is why we moved up here to begin with. When we were in the city she was hospitalized 5 times in 18 months.

We have just gotten in contact with the Family Resource Center here in town and they are sending me information. I asked about play groups etc but nothing like that here.

I loved the idea about a game or book or something that incorporates his love of UPC and touching. I decided to make one and am in the process now - Thank you for the idea

Again I appreciate all of you comments and I apologize that it took me so long to get back. I just started a business in January and things have yet to settle down.

To help get his speech more communicative, what I'd do is pick something he says/does that could be communicative, and just assume it is. Every time he does that thing, you reply with the same response.

Two examples of how I've used this to develop communication with others are with a girl with Rett Syndrome, and with my pet rats. With the Rett girl, she was high functioning for Rett Syndrome in that she could say single words, but they weren't very communicative. One word she often said was 'juice'. I decided to assume every time she said that she was thirsty, and offer her a sip from a water bottle. After awhile, instead of saying it apparently randomly, she'd say it every couple minutes for awhile and then stop, which I figured was her drinking until she was no longer thirsty.

With my pet rats, I noticed they'd sniff at the cage bars when something outside their cage interested them. I took this as a request to go out, and started taking them out of their cage whenever they did this. At first a few times I'd try to take them out and they wouldn't want to go, but after awhile of this they started only sniffing the bars when they actually wanted out (ie, when they'd happily let me grab them or even scurry out on their own).

I suspect most parents do this with NT babies, too. When a little kid says 'mama', that could be just random babbles. But their mother perks up and gives them some attention when they do this, so they learn that saying 'mama' gets them mother's attention. Likely most parents don't realize the first few 'mama's aren't communicative. But with autistic kids you might notice it simply because the kid doesn't welcome unsought-after attention as readily.

By the way, the fact that your son talks at all at 18 months indicates a strong likelihood that he'll be high functioning.