Autism thread

Well, diagnosis confirmed. Autism it is. Now on to steadily increasing his therapy over the next year or two and hoping for the best.

Sorry to resurrect this thread, but just kind of needed a place to blab. We are getting a bit concerned about my 21 month old son, as he's starting to exhibit some signs of ASD.

He has been a very healthy, happy and active baby. We've always noticed that he doesn't respond to his name most of the time, and when he's intent on something (playing with trains, etc.) it's very hard to break his concentration. He does engage in play with us, and loves to be chased and chase us around the house. He interacts well with his older sisters (11 and 13). His language is definitely delayed, as he only has a vocabulary of about 15-20 words, and most of them aren't very clear. He doesn't use any words together, or in a sentence.

I don't really know what to say, other than our GP is going to have some testing done including his hearing. As a child I had terrible ears, and ended up with tubes in my ears twice. I have hearing loss as an adult. The last time we had him in when he had a cold, she said his ears were completely blocked. I have heard tales of kids who once their ears were cleared they started talking right away.

He certainly has reached most of his milestones to date. He will put his bath toys away if you ask him, and likes to have books read and can point things out in the book.

As a registered nurse, and my wife an OT.. we of course are probably freaking out way more than we should.

El-Producto wrote:

Sorry to resurrect this thread, but just kind of needed a place to blab. We are getting a bit concerned about my 21 month old son, as he's starting to exhibit some signs of ASD.

He has been a very healthy, happy and active baby. We've always noticed that he doesn't respond to his name most of the time, and when he's intent on something (playing with trains, etc.) it's very hard to break his concentration. He does engage in play with us, and loves to be chased and chase us around the house. He interacts well with his older sisters (11 and 13). His language is definitely delayed, as he only has a vocabulary of about 15-20 words, and most of them aren't very clear. He doesn't use any words together, or in a sentence.

I don't really know what to say, other than our GP is going to have some testing done including his hearing. As a child I had terrible ears, and ended up with tubes in my ears twice. I have hearing loss as an adult. The last time we had him in when he had a cold, she said his ears were completely blocked. I have heard tales of kids who once their ears were cleared they started talking right away.

He certainly has reached most of his milestones to date. He will put his bath toys away if you ask him, and likes to have books read and can point things out in the book.

As a registered nurse, and my wife an OT.. we of course are probably freaking out way more than we should.

Stop going to WebMD.

Paleocon wrote:
El-Producto wrote:

Sorry to resurrect this thread, but just kind of needed a place to blab. We are getting a bit concerned about my 21 month old son, as he's starting to exhibit some signs of ASD.

He has been a very healthy, happy and active baby. We've always noticed that he doesn't respond to his name most of the time, and when he's intent on something (playing with trains, etc.) it's very hard to break his concentration. He does engage in play with us, and loves to be chased and chase us around the house. He interacts well with his older sisters (11 and 13). His language is definitely delayed, as he only has a vocabulary of about 15-20 words, and most of them aren't very clear. He doesn't use any words together, or in a sentence.

I don't really know what to say, other than our GP is going to have some testing done including his hearing. As a child I had terrible ears, and ended up with tubes in my ears twice. I have hearing loss as an adult. The last time we had him in when he had a cold, she said his ears were completely blocked. I have heard tales of kids who once their ears were cleared they started talking right away.

He certainly has reached most of his milestones to date. He will put his bath toys away if you ask him, and likes to have books read and can point things out in the book.

As a registered nurse, and my wife an OT.. we of course are probably freaking out way more than we should.

Stop going to WebMD.

Really?

Really

On a serious note though, kids develop differently, it doesn't mean anything yet. And even if it does, the spectrum is so large that a kid might be on it and a large percentage of parents would never even know. It's not necessarily even a cause for concern.

Now that I think about it, I'm kind of curious about my own development, especially with speech.

It's good that you're considering ASD so young because if there is an issue it will help to catch it early. That said, if your only symptoms are that he doesn't always respond to his name and doesn't use multi-word phrases, that's not terribly uncommon at that age, particularly for boys. Just keep your pediatrician in the loop and let them decide whether it's a concern.

My nephew is autistic (on the spectrum, anyway) and the symptoms you outline do match up, but obviously there can be a ton of other reasons like you described. One big signifier for my brother was that my nephew wouldn't share or typically show his parents the toys he was playing with. He didn't seem to see any value in it. Or in asking for help with his toys for that matter.

Catching onto any learning difficulties, regardless of whether or not it's autism, is good and it sounds like you guys are on the right track.

Lot's of good information already in this thread.

My son, who will be 3 in July, was diagnosed with mild autism at 15 months. Our pediatrician gave a referral to a pediatric neurologist. Pediatric neurologist said he is most likely PDD-NOS but gave the mild autism diagnoses in order to qualify for the state Early Intervention Program (I'm in NJ).

Anime has a better understanding of Alabama's system but for NJ, after the diagnosis, you apply for EIP and then a team comes to your house to assess your child in all areas (Gross Motor, Fine Motor, etc.). Since 18 months, my son has received 2 O.T, 2 D.I. and 2 Speech sessions per week. 2 months ago, we reduced D.I. to once per week. O.T. is now focused solely on social integration. He is vocal but exhibits some echolalia. By all accounts, he has made amazing progress and is basically a regular kid with some quirks. He absolutely loves music and is always singing a song. Gives great hugs and kisses and doesn't have any issues with eye contact. His hand flapping and tippy-toe walking have all but disappeared.

One thing I will say, that I do believe in, is that if your child is on the milder end, don't go the ABA route. ABA is very intensive and from what I've gathered, more suited to children on the low-functioning end of the spectrum. Just as no two kids on the spectrum are identical, no two treatment plans are identical. You will occasionally run into a therapist who tries to use a "one size fits all" treatment plan. Have the mind to identify these people and demand a new therapist. There are some therapists your child just will not click with. In NJ, the EIP program runs until the child is 3 years old so wasting time on therapists who weren't getting through to our son was not an option.

To the more personal end: don't listen to your family. Go with your gut. If your child is falling behind or displaying autistic symptoms, act immediately. The best chance of treating autism is catching it early and starting therapy early. Kids minds are still malleable. One thing in a book I read stuck out to me: the brain has connections. Little bridges. In autistic kids, some of these bridges are not there. But they can be built by therapy. And the cool thing is, once built, these bridges in your brain don't erode or collapse.

Don't lose hope. Who among us is "normal"? We all have quirks. As I'm sure dozens of Goodjers can attest, I'm a little socially awkward and am not the easiest person to socialize with. We all have our thing that make us different. So does your kid. He's not damaged. He's not broken. He's unique and different.

Some sites that helped me deal with this are Wrong Planet which is a huge forum and believe it or not, the Autism subreddit which is not very active but has some occasional articles that have helped.

Apparently, we have a small number of Goodjers who have autistic children at different stages of life so you can always come here to vent, get advice, gloat about a new development in your son's life. If you want to PM me I can give you my Google phone # as well. Sometimes it just helps to talk.

I'd also like to ask everyone to post a picture of their child if they feel comfortable with it. Seeing their cute little faces adds a human element to a topic that can at times be stressful and depressing. Every time I get down or feel exhausted, I look at a picture of my son and the overwhelming feeling of love gives me a much needed kick in the ass.

This is Émile

IMAGE(https://lh4.googleusercontent.com/-wwtIgA-NSjo/TnkwT4HXFWI/AAAAAAAAEZU/lZBd7gfWd2I/s800/DSC01519.JPG)
IMAGE(https://lh6.googleusercontent.com/-kISBIau8Uvo/UJ0FCNJg90I/AAAAAAAAEZU/ymOMjlTPZLA/s576/IMAG0374.jpg)

El-Producto wrote:

Sorry to resurrect this thread, but just kind of needed a place to blab. We are getting a bit concerned about my 21 month old son, as he's starting to exhibit some signs of ASD.

If you're concerned, follow it through. Get your pediatrician involved and get him/her to give you a referral to a Pediatric Neurologist. If you happen to have one of those pediatricians who are autism deniers, get another pediatrician and get that referral. Getting a diagnosis of Aspergers, Autism, PDD-NOS, etc. is Step 1 in getting in the EIP program and getting your son the help he needs. There's also the possibility your son is not on the spectrum and something else is going on.

However from the brief description you gave, nothing is standing out as indicative of autism. It sounds like your son might just have blockages and need ear tubes. At such a young age, all language is learned through mimicry. If your son has trouble hearing it could very well explain his limited vocabulary. The only "symptoms" you described were limited vocabulary and occasional inability to recognize when he is being called. Both which are also symptoms of auditory blockage.

My son is just getting started with EIP. It's possible, but at this point unlikely that he's on the spectrum. His major issues are using language expressively and pragmatically. He does look at us, but compared to other children he does it less often, especially with people other than his parents. That concerns me, but of course I'm not the expert here. He also either isn't all that interested in or doesn't know how to interact with children his age very well. Still, he's very affectionate, especially with us and his newborn little sister, and it's clear he's intelligent. He has a great sense of humor and laughs a lot. The assessors who've worked with him tell me that he's really on the cusp, so I'm glad that they've agreed to give him help. I'm on the point of having additional assessments done through medical referral, to see if it would benefit him to have a real diagnosis, which Early Access does not provide.

At the same time, I'm worried that he's going to have this as a permanent obstacle and feel very guilty. It's good to see this thread. At this point my husband and I feel kind of isolated, that our child is the only one who's having some difficulty. Hearing from other parents who are also going through similar things helps a lot.

concentric wrote:

My son is just getting started with EIP. It's possible, but at this point unlikely that he's on the spectrum. His major issues are using language expressively and pragmatically. He does look at us, but compared to other children he does it less often, especially with people other than his parents. That concerns me, but of course I'm not the expert here. He also either isn't all that interested in or doesn't know how to interact with children his age very well. Still, he's very affectionate, especially with us and his newborn little sister, and it's clear he's intelligent. He has a great sense of humor and laughs a lot. The assessors who've worked with him tell me that he's really on the cusp, so I'm glad that they've agreed to give him help. I'm on the point of having additional assessments done through medical referral, to see if it would benefit him to have a real diagnosis, which Early Access does not provide.

At the same time, I'm worried that he's going to have this as a permanent obstacle and feel very guilty. It's good to see this thread. At this point my husband and I feel kind of isolated, that our child is the only one who's having some difficulty. Hearing from other parents who are also going through similar things helps a lot.

Your son sounds exactly like my son. His Pediatric Neurologist thought he was off the spectrum, more PDD-NOS, but gave him the mild autism diagnosis at 18-months in order to qualify for EIP. This was the biggest factor in my sons incredible progress. Getting the diagnosis and starting EIP at 18 months. If you're on the fence with additional assessments, get off the fence and have them done. Have him looked at by a Pediatric Neurologist.

My son's biggest issue right now is pragmatic speech. One of the most frustrating things about spectrum disorders is trying to find something that really seems to identify your child. I came across this article which explained Semantic Pragmatic Speech Disorder in detail and it really hit home. Out of everything I've read regarding autism and related learning disabilities, this one seems to relate to my son the most. He has trouble with pronouns (I, you, me) and such. I picked up this kit which is geared for teachers and it's helped quite a bit both to understand my son better and how better to construct my words in a way he will understand.

The good news is that my son's eye contact is now on par with neurotypical kids. His imaginative play as well. On pretty much all fronts, my son has blossomed and is virtually indistinguishable from neurotypical kids to an untrained eye. I can't speak enough about the virtues of EIP and parent advocacy.

El-Producto wrote:

Sorry to resurrect this thread, but just kind of needed a place to blab. We are getting a bit concerned about my 21 month old son, as he's starting to exhibit some signs of ASD.

He has been a very healthy, happy and active baby. We've always noticed that he doesn't respond to his name most of the time, and when he's intent on something (playing with trains, etc.) it's very hard to break his concentration. He does engage in play with us, and loves to be chased and chase us around the house. He interacts well with his older sisters (11 and 13). His language is definitely delayed, as he only has a vocabulary of about 15-20 words, and most of them aren't very clear. He doesn't use any words together, or in a sentence.

I don't really know what to say, other than our GP is going to have some testing done including his hearing. As a child I had terrible ears, and ended up with tubes in my ears twice. I have hearing loss as an adult. The last time we had him in when he had a cold, she said his ears were completely blocked. I have heard tales of kids who once their ears were cleared they started talking right away.

He certainly has reached most of his milestones to date. He will put his bath toys away if you ask him, and likes to have books read and can point things out in the book.

As a registered nurse, and my wife an OT.. we of course are probably freaking out way more than we should.

I'm not on the autism spectrum (well, I've never been tested, so I don't think I am) but when I was a toddler my ear canals were almost completely blocked up so I seemed to have unnatural focus when playing, I didn't respond to my name or most other noises, and I had frequent meltdowns because I couldn't communicate well or understand what was being said to me, or asked of me.

My ears were finally cleared of the blockage (my mother said it was pretty gross and refused to allow me to look at the stuff that came out of my head) and after that I had a new issue of being over-stimulated because I hadn't learned to block out unwanted noise (and I still have some issues with that unfortunately - it's led to some less than pleasant moments for me and people I live with or near). On the bright side, my vocabulary improved very quickly and I started talking up a storm.

I also fell behind a bit in school until grade three when Mum says it was like something just clicked into the "on" position in my head and I started to do much, much better (from a D student to a pretty solid B-, except for math which I am still rubbish at).

If it is an ear blockage, I very much recommend helping your son learn to sleep though noise. My parents made the mistake of keeping things unnaturally quiet for me after my ears were cleared out and I'm still learning, at 37 years old, to deal with unwanted noise (and I've got the added bonus of tinnitus in both ears. yay!).

Best to be safe though and look into everything and get any help you can - early diagnosis and help is the best bet.

FSeven wrote:

Your son sounds exactly like my son. His Pediatric Neurologist thought he was off the spectrum, more PDD-NOS, but gave him the mild autism diagnosis at 18-months in order to qualify for EIP. This was the biggest factor in my sons incredible progress. Getting the diagnosis and starting EIP at 18 months. If you're on the fence with additional assessments, get off the fence and have them done. Have him looked at by a Pediatric Neurologist.

My son's biggest issue right now is pragmatic speech. One of the most frustrating things about spectrum disorders is trying to find something that really seems to identify your child. I came across this article which explained Semantic Pragmatic Speech Disorder in detail and it really hit home. Out of everything I've read regarding autism and related learning disabilities, this one seems to relate to my son the most. He has trouble with pronouns (I, you, me) and such. I picked up this kit which is geared for teachers and it's helped quite a bit both to understand my son better and how better to construct my words in a way he will understand.

The good news is that my son's eye contact is now on par with neurotypical kids. His imaginative play as well. On pretty much all fronts, my son has blossomed and is virtually indistinguishable from neurotypical kids to an untrained eye. I can't speak enough about the virtues of EIP and parent advocacy.

This is really, really helpful. Thanks for the post and for the information.

It's so refreshing to hear others experiences. Of course as I read more about ASD I find myself overanalyzing his behavior. I'm not going to lie everything seems so obvious now. I can't wait until his appointment on the 14th to see what our GP says. My wife is really struggling with the thought of Owen being Autistic.

Thanks all for the supportive words its what makes this such a great community.

El-Producto, my bet is they won't diagnose him with autism, but they might be noncommital and want to take a wait and see approach. Even if he did have autism, being able to use several words before 2 years old is a very good prognostic sign. I'd probably get him into some speech therapy once a week or so regardless. It can't hurt.

Sad to say but I'm jealous honestly. Our son (autism) will turn 2 in a couple of weeks. He still can only say one word and even that is not very clear or spontaneous. Doesn't know his name. He understands maybe 20-25 very basic words or short phrases like "up", "clap", etc. Right now he's up to over 15 hours of various types of therapy per week and I still worry that maybe he should be getting even more.

My son (Émile) didn't receive speech therapy until he was 2.5 years old. His initial therapy was lots of OT. Émile absolutely loves music and most of his early language was learned through song memorization and imitation (echolalia). He will take things people say and turn them into songs on the spot, making up lyrics using the sentences people say and creating his own melodies. The biggest comment most people say about him is that he's always singing a song and seems very happy and content.

That said, I think it's important to expose your child to lots of different things so that he might find something that clicks with him. Maybe your kid needs pictures (Visual learning is huge with kids on the spectrum). I always have music playing somewhere in the house and I think if he wasn't exposed to it he might not have the language he did at that age, even if it was based off simple memorization of songs (he knows about 6 Beatles songs by heart). Émile just clicked with music. Yo Gabba Gabba really helped him as well (very musical show). These days he really likes to watch Super Why which has helped him with spelling and reading. At 3 years old, he's spelling words like more, share, music, positive, his own name, etc. while the neurotypical kids in class are crashing toy cars into each other over and over again.

Since getting the speech therapy, my sons' echolalia has pretty much stopped completely. Most kids on the spectrum have some sort of sensory issue. My sons' issue is oral hyposensitivity. Hypersensitivity is an overstimulation and can cause distress. Hyposensitivity is an understimulation and causes the individual to seek out additional stimulation. So my son seemed to drool a lot and was always putting his fingers in his mouth. The drooling has stopped but he still puts his fingers in his mouth and chews on the inside of his cheeks (both me and mommy do that too). The speech therapist said part of the reason he has trouble with speech is that his tongue and mouth muscles are underdeveloped. So I went to TalkTools and bought a bunch of stuff such as the chew tools and the horn kit. Using the horns and chews really exercised my sons' mouth muscles and lips. He's enunciating better and is more able to speak clearly.

Where his diagnosis comes into play is if you start singing with him. He might tell you to stop. Or if you get a word from the lyrics wrong, he will become distressed and have to start the song over. Because his memory is virtually photographic, it's impossible to slip anything by him. Using his love for music, I'm starting to make him realize it's okay not to be rigid in all things. Singing familiar melodies (say Jingle Bells) but using lyrics associated with something he is engaged in (maybe brushing teeth), it helps his creativity, imagination, and makes him more flexible if someone doesn't sing something exactly as he wants it. For instance, sung to the tune of Jingle Bells, "Brushing teeth, brushing teeth, brush them all the way." and I sing it in a silly way so he understands the point of it is to be silly. We end up cracking up and he usually runs with it: "Going to bed, going to bed, going to bed right now..."

Didn't intend to be this long winded but one thing I do want to say is that for those parents whose child is in EIP, be vigilant. If the therapist is late frequently or cancels without notifying you, get a new one. Stay on them. Tell them to text you on the morning of their therapy day to let you know what's going on. If the therapist is fresh out of school and is forcing book knowledge and has a "one size fits all" approach to therapy, request a new one. We had a young therapist who was using ABA techniques for children with classic autism (very low functuioning) on our son who is very high functioning. Needless to say, my son wasn't getting anything out of the therapy and after 2 sessions we got someone new. Get someone who has experience and who will custom tailor their therapy to your child.

Time is of the essence with EIP. Your child ages out at 3 so every session is important. Stay in touch with your case worker. Make them work for you. If they are too hard to get a hold of or are a bit lazy (ours certainly was), talk to their supervisor. The therapists come from private businesses that provide therapists to the state for EIP. It is in their bests interests to make taxpayers happy. Don't let things stagnate. Don't settle for anything less than the best for your child.

We've started therapy this week. Next week he'll start getting behavioral therapy 4 times a week. I had a good talk with the assessor, who's got almost 20 years of experience in the field. In her opinion, getting a diagnosis at this point could be counterproductive, because she expects him to make progress quickly, and she wants to avoid a label if possible. She was frank - in our district, we do not need a diagnosis to get help. This is not the case with other districts she covers. So I will go with what she says at this point. She said that in my son's case diagnosis would be difficult, because so much depended on his mood, but considered it likely that he would be categorized as PDD-NOS. She also said that I shouldn't be too worried. He's got good foundations in many areas, especially in two very important ones: how well he imitates others, and his desire to please. We'll see how it goes, but my husband and I are cautiously optimistic. We're very lucky to live in an excellent district as well as very close to a major university, so easy access to good resources.

I have a neighbor whose son received help for a language delay (also one of my son's issues), and her son received excellent treatment for free at a preschool with a very low adult-child ratio after he aged out of Early Access. She was very happy with the treatment her son received both before and after he aged out of Early Access. The EA treatment is done in-home or at daycare.

I've started to read the autism chapter in Andrew Solomon's book Far from the Tree. I recommend it highly. It's like reading a long New Yorker article on the condition and its effect on the parents of an autistic child. The writing is clear and elegant, and the author is very empathetic towards all involved. I will say that the children in this chapter are severely autistic, but that the focus is on how the parents respond to the situation. I'm looking forward to reading the rest of the book, which has chapters on parents with children who are for example, deaf or have Down's Syndrome.

For parents who are feeling guilty, or who find themselves getting battered by a lot of the pseudo-science out there surrounding ASD, I would recommend reading Autism's False Prophets by Paul Offit. Evidently he's demonised a bit in the fringe community, but the book was recommended to me by a fairly eminent pediatrician with whom I was working, and I found it to be a very readable, concise accounting of how ASD diagnosis, treatment, and controversy have progressed over the last decade or two. It provides an interesting perspective on how certain government policies came to be, why the medical community has taken so much abuse (rightly or wrongly), and some inspirational thoughts on the end about the progression of how we will diagnose and treat the disease. The scientific information at the end is slightly dated, which is unsurprising given how fast the research is moving, but overall I think members of our community here would find this a very worthwhile read.

Also, for those who are interested, the DSM 5 was recently approved and is scheduled to go into use this coming summer. Asperger's is going away as a diagnosis, and is being folded into the continuum of ASD. More and more it seems that autism is a true spectrum of behaviours, and we're diagnosing a lot of people within the ASD spectrum both for purposes of getting educational resources who might, in past eras, simply have been regarded as a bit odd.

Good luck to all of you. Being the parent of an autistic child takes a special strength.

Coldstream wrote:

For parents who are feeling guilty, or who find themselves getting battered by a lot of the pseudo-science out there surrounding ASD, I would recommend reading Autism's False Prophets by Paul Offit. Evidently he's demonised a bit in the fringe community, but the book was recommended to me by a fairly eminent pediatrician with whom I was working, and I found it to be a very readable, concise accounting of how ASD diagnosis, treatment, and controversy have progressed over the last decade or two. It provides an interesting perspective on how certain government policies came to be, why the medical community has taken so much abuse (rightly or wrongly), and some inspirational thoughts on the end about the progression of how we will diagnose and treat the disease. The scientific information at the end is slightly dated, which is unsurprising given how fast the research is moving, but overall I think members of our community here would find this a very worthwhile read.

Also, for those who are interested, the DSM 5 was recently approved and is scheduled to go into use this coming summer. Asperger's is going away as a diagnosis, and is being folded into the continuum of ASD. More and more it seems that autism is a true spectrum of behaviours, and we're diagnosing a lot of people within the ASD spectrum both for purposes of getting educational resources who might, in past eras, simply have been regarded as a bit odd.

Good luck to all of you. Being the parent of an autistic child takes a special strength.

I read the Offit book a couple of years ago. It's excellent, I agree. The husband of one of my colleagues does autism research and thought very highly of it.

Another related book, though not specifically about autism, is Seth Mnookin's The Panic Virus. This book is more about the anti-vax movement in general, and has some very interesting sections on the history of vaccination and reactions against it, but the entire book is, I thought, a fascinating read.

I guess I'm glad I already read these; it might be time to pull them out again.

Quick update, we had our appt. with our GP (who we love). She has no concerns whatsover that he is autistic. She isn't even really concerned about his speech, but said if it would put us at ease, she would make a referral to an SLP for assessment.

It's been over a year since I started this thread. I guess it's time for an update.

My son will be 3 in less than 4 months. He's been in therapy of one form or another since around 16 months. We've steadily increased his hours and, starting next week he'll be getting over 20 hours of services a week at the major autism treatment center in this area. All this is quite expensive and almost none is covered by insurance in this state.

Luckily, money is one issue we are doing OK with, at least currently. A few years of this could get ugly though. I have seen some studies that indicate outcomes are worse for kids with minority parents and it's speculated this is due to limited financial resources, and thus less access to treatment. This is a major shame... especially when you take into consideration that government-funded intensive early intervention would probably prevent lifelong disability payments for many kids. But whatever, I'm thankful for what I've got.

Unfortunately, despite all the time and effort in therapy, and of course at home as well, progress has been minimal at best. He still understands very little. A few months ago his receptive language was estimated to be at the level of an average 8-9 month old. I don't think it's changed. He can only say 1-2 loose word approximations and make a couple of signs, all inconsistently and usually requiring prompting.

In addition to these severe language delays, some of the other symptoms of autism have become apparent. He is now very sensory seeking. Right now his thing is to lick everything. Earlier he was squealing or screeching constantly. We've gone through phases of teeth grinding, hand flapping, finger flicking. Luckily, he seems to outgrow a behavior, but he will always replace it with something else. He's hyper, unfocused and craves constant movement.

So, anyway, things don't seem to be headed in the right direction. A year ago we thought odds were good he'd be high functioning, maybe even go on to lose the diagnosis at some point. Now we're thinking a low functioning outcome is very likely. Obviously he's still very young, but I can't shake this feeling that there's a window of opportunity for our son, still quite open, but steadily closing by the month. Right now, I'm not even confident saying he will be potty trained in his lifetime, much less achieve language fluency or the ability to live independently. That's pretty tough to think about.

Hopefully the next year is better and he makes dramatic progress... or at least things reach some kind of equilibrium and I can begin working on acceptance. I mean, it could be a lot worse. At least he isn't fast enough to run away or strong enough to really hurt us... yet.

What sort of help with sensory issues are you getting? My son has some of the same behaviors and we are just starting OT. We're about at the end of the first Wilbarger DPPT 2 week session. It's made some difference, but not all that much. Most everything goes into his mouth, and he sucks on his fingers/has fingers in navel constantly, especially when stressed. Deep pressure in general also soothes him. My son does talk but most of the social language he uses needs to be prompted. And he's not yet potty trained, but is more aware when he needs to be changed.

This is a quickly written, fairly disorganized summary of where he is now. While many of the therapists who see him say that we don't have that much to worry about (so far at least), it's hard to know what that means, because it's a moving target. He improved quite a lot from EA, but not as much as we had hoped. I think that for me that is difficult because I'd like to be better able to plan for a certain path for him. A student came in the other day to meet with me because I'm his academic advisor. Turns out he has Asperger's, and doesn't know about all the resources at the university that he needs to find so he can get through the term. I talked with him for a while and I'll certainly keep track of him, because I keep thinking this is a way to pay back some of the help my son's received, as well as a way to pay it forward. Are you happy with the therapy you've received to this point?

What do you think would be most helpful now for you to hear or know?

Don't be discouraged gewy. Things can change instantaneously. I truly believe they every spectrum child has their own "thing" that will work for them. For my son it was music. All the words he learned early were from Yo Gabba Gabba.

gewy wrote:

Luckily, money is one issue we are doing OK with, at least currently. A few years of this could get ugly though. I have seen some studies that indicate outcomes are worse for kids with minority parents and it's speculated this is due to limited financial resources, and thus less access to treatment. This is a major shame... especially when you take into consideration that government-funded intensive early intervention would probably prevent lifelong disability payments for many kids. But whatever, I'm thankful for what I've got.

For those of us in this situation at this time, financially speaking, it sucks. Insurance companies are fighting tooth and nail to prevent autism therapy from becoming covered.

gewy wrote:

Unfortunately, despite all the time and effort in therapy, and of course at home as well, progress has been minimal at best. He still understands very little. A few months ago his receptive language was estimated to be at the level of an average 8-9 month old. I don't think it's changed. He can only say 1-2 loose word approximations and make a couple of signs, all inconsistently and usually requiring prompting.

Try new things that involve language. Anything new you can think of. The idea is to expose him to a wealth of new experiences in hopes that something will "click". The best description I heard of what is going on in the brain of a spectrum child was from his pediatric neurologist. Loosely paraphrasing, she said the brain has "bridges" which manage the flow of information and which connect all parts of the brain together to share the same information. The bad news is that spectrum children are missing some of these bridges causing speech issues, social issues, etc. The good news is that these bridges can be built, especially in young children with malleable brains, and that once the bridges are built they are there permanently.

So lots of exposure. And give him some time to let it absorb. If he doesn't respond immediately to something new, try it again the next day. And again. Give it a week or two to see how he responds. With the Gabba Gabba thing, I chose it because it's very few colors and there's lots of catchy songs. I sat and watched it with my son for a good week, 2 episodes a day. I tried to repeat episodes every other day for familiarity. I would sing along with the songs and overexaggerate things, "Oh man! Brobee is sad because he lost his sock!". Nothing from my son. After about 10 days he started singing along as he had memorized the words from the previous sittings. At that time he still wasn't using spontaneous speech and the only words he used was when he sang those Gabba Gabba songs.

gewy wrote:

In addition to these severe language delays, some of the other symptoms of autism have become apparent. He is now very sensory seeking. Right now his thing is to lick everything. Earlier he was squealing or screeching constantly. We've gone through phases of teeth grinding, hand flapping, finger flicking. Luckily, he seems to outgrow a behavior, but he will always replace it with something else. He's hyper, unfocused and craves constant movement.

My son exhibited a lot of those same behaviors. The fact that your son outgrows them is a good sign. My son also seems to have an inexhaustable supply of energy and can be unfocused. He has outgrown the teeth grinding which he used to do a lot. When he did it I would pinch in his cheeks and make his lips do a fishy face while saying "Stop grinding your teeth!". He found it amusing. He also used to hand flap but outgrew that.

He still has a hyposensitivity to oral stimulation and a hypersensitivity to sound (although this is getting much better). When he's idle he likes to put his fingers in his mouth (I've caught him with his whole fist in his mouth) and chew on his nails, etc. I always tell him "Out the mouth" and he takes his fingers out. It's gotten to the point where I can just look at him and he will take it out. When he was younger (age 2-3) I got him some chewy tubes from Talk Tools which helped at first but soon it was obvious he had actually chewed off bits and pieces of the silicone and swallowed them.

I also want to mention the horn kit from Talk Tools. My son's speech therapist (who was amazing and whom we give full credit to so much of my son's oral progress) explained that he has a "lazy" tongue and doesn't know how to use it right. She recommended this kit and explained how to use it. Using the horn properly requires proper use of the tongue. It's "tongue exercise" so to speak. We would have my son practice every day as directed and now he talks normally. I still have some of these plastic horns in a box. If you want them I can sterilize them and send them your way.

With the lack of focus, I always tried to slow things down for him. First off, I would eliminate any outside distractions (TV, radio, etc.). When he was changing if he looked somewhere else, I would slowly remind him to focus on the task at hand and would not continue until he brought his attention back to putting on his socks or whatever. Remember that lots of things are magnified in a spectrum child's head so anything you can do to slow things down and guide him gently will be a huge help.

gewy wrote:

So, anyway, things don't seem to be headed in the right direction. A year ago we thought odds were good he'd be high functioning, maybe even go on to lose the diagnosis at some point. Now we're thinking a low functioning outcome is very likely. Obviously he's still very young, but I can't shake this feeling that there's a window of opportunity for our son, still quite open, but steadily closing by the month. Right now, I'm not even confident saying he will be potty trained in his lifetime, much less achieve language fluency or the ability to live independently. That's pretty tough to think about.

There is DEFINITELY a window of opportunity. You still have a good 3-4 years to make huge leaps and gains. And don't worry about the potty training. My son turned 4 on July 10th and just started "making yellow water" in the potty. He will go to the potty when he is ready. If you can afford it, I would also recommend an iPad. My son learned the concept of potty training from a cute little app. There's tons of apps (social, language, etc.) for spectrum kids.

gewy wrote:

Hopefully the next year is better and he makes dramatic progress... or at least things reach some kind of equilibrium and I can begin working on acceptance. I mean, it could be a lot worse. At least he isn't fast enough to run away or strong enough to really hurt us... yet.

Hang in there gewy. Things will get better. Remember, your son is just different. He has a different way of perceiving the world and you're doing your best to find what it is. And above all, despite his lack of language, know that HE LOVES YOU VERY MUCH. He may not be able to say it and his actions may not seem to express it but trust me, he loves you more than anything in the world. You need to constantly remind yourself of that since you may not get that feedback from him for awhile.

Also, maybe we can start an Autism related book sharing club? I have a ton of books that I am no longer using which might be useful to some of you. Academic books, medical books, and even books used by therapists. I would be happy to start sending them out if anyone needs them. I'll gather them tonight and post up a list.

If you ever need to talk, I'm a PM away.

FSeven wrote:

Don't be discouraged gewy. Things can change instantaneously. I truly believe they every spectrum child has their own "thing" that will work for them. For my son it was music. All the words he learned early were from Yo Gabba Gabba.

So true. You'll see this a few times through the post, FSeven, because this is a great post. You have fantastic advice.

FSeven wrote:

With the lack of focus, I always tried to slow things down for him. First off, I would eliminate any outside distractions (TV, radio, etc.). When he was changing if he looked somewhere else, I would slowly remind him to focus on the task at hand and would not continue until he brought his attention back to putting on his socks or whatever. Remember that lots of things are magnified in a spectrum child's head so anything you can do to slow things down and guide him gently will be a huge help.

This also helps tremendously with my son. If the TV is on and we need to get his attention it takes 3-4x longer to do that. Already it takes longer for him to respond even without such distractions. I've made it a routine to speak slowly, clearly, and at a slightly higher volume when I talk to him. I also repeat directions if he starts to lose focus in the middle of a task. I provide visual and verbal alternatives to help him with words when I want him to make a choice. Our speech therapist uses a modified PECS during his sessions.

gewy wrote:

So, anyway, things don't seem to be headed in the right direction. A year ago we thought odds were good he'd be high functioning, maybe even go on to lose the diagnosis at some point. Now we're thinking a low functioning outcome is very likely. Obviously he's still very young, but I can't shake this feeling that there's a window of opportunity for our son, still quite open, but steadily closing by the month. Right now, I'm not even confident saying he will be potty trained in his lifetime, much less achieve language fluency or the ability to live independently. That's pretty tough to think about.

FSeven wrote:

There is DEFINITELY a window of opportunity. You still have a good 3-4 years to make huge leaps and gains. And don't worry about the potty training. My son turned 4 on July 10th and just started "making yellow water" in the potty. He will go to the potty when he is ready. If you can afford it, I would also recommend an iPad. My son learned the concept of potty training from a cute little app. There's tons of apps (social, language, etc.) for spectrum kids.

I agree about the window. There is time. You're not out of the forest yet, but on the other hand, that means you don't know how large the forest is, if that metaphor helps at all. The iPad can be very helpful too. Potty training, etc. I got an app that helps with eye contact. There are apps out there for social stories when you reach that point (we're just getting there). He learned his alphabet and numbers on his own with apps. And it's great in therapy as a reward to reinforce behaviors such as sitting still and focusing. As I saw in my son's music therapy session Monday.

gewy wrote:

Hopefully the next year is better and he makes dramatic progress... or at least things reach some kind of equilibrium and I can begin working on acceptance. I mean, it could be a lot worse. At least he isn't fast enough to run away or strong enough to really hurt us... yet.

FSeven wrote:

Hang in there gewy. Things will get better. Remember, your son is just different. He has a different way of perceiving the world and you're doing your best to find what it is. And above all, despite his lack of language, know that HE LOVES YOU VERY MUCH. He may not be able to say it and his actions may not seem to express it but trust me, he loves you more than anything in the world. You need to constantly remind yourself of that since you may not get that feedback from him for awhile.

So true. You and his mother are his world. I've asked my son's therapists what they enjoy about their work and they tell me that they love the development they see in the children they work with, no matter how minor it might seem to others. So if a child says "open...please" without being prompted, when before "please" always needed prompting, they see it as a victory. I have a competitive streak, so my tendency is always to want to compare my son to the typically developing children. Bad move. It just depresses me and it's ultimately not fair to my son. I always have to bring myself back to taking him on his own terms. It doesn't mean that the differences I see between him and the other children at his daycare don't make me sad and worried. But I also tell myself that he's getting great help now, and the chances are excellent that this will make a big difference for him in the future.

Some other advice I value: don't stress yourself out excessively by giving him treatment/therapist etc. At some point let him just be a kid and play.

FSeven wrote:

Also, maybe we can start an Autism related book sharing club? I have a ton of books that I am no longer using which might be useful to some of you. Academic books, medical books, and even books used by therapists. I would be happy to start sending them out if anyone needs them. I'll gather them tonight and post up a list.

I would love that. I read everything I can, but there's a lot out there, and as you know, a lot of it is of questionable value. Any blogs or other internet sites you like would also be welcome. I'm sure you read The Thinking Person's Guide to Autism - lots of good stuff there (but the Facebook group is more active now). Have you looked at Susan Senator's blog? She has an adult son with severe autism. Not only does she have good advice, but I've benefited a lot from her sharing her experiences parenting him. She's a wonderful writer, full of compassion and intelligence.

FSeven wrote:

If you ever need to talk, I'm a PM away.

Same here.

gewy wrote:

My son will be 3 in less than 4 months.
>snip<
So, anyway, things don't seem to be headed in the right direction. A year ago we thought odds were good he'd be high functioning, maybe even go on to lose the diagnosis at some point. Now we're thinking a low functioning outcome is very likely. Obviously he's still very young, but I can't shake this feeling that there's a window of opportunity for our son, still quite open, but steadily closing by the month. Right now, I'm not even confident saying he will be potty trained in his lifetime, much less achieve language fluency or the ability to live independently. That's pretty tough to think about.

I know the feeling, I've been there. That window is larger than you think. My first born was operating at a very similar level of function to what you describe at 3. He will be 15 this year, and the boy simply never shuts up. I frequently need to tell him to pipe down because he gets so excited playing TF2 or Garry's Mod with his friends all on voice chat. If you met him you'd probably think he was high strung, maybe hyperactive, but spending an hour with him it's quite likely you'd never guess he was on the spectrum. He's integrated into regular schoolrooms, with some additional supports available to him if/when he needs them.

Potty training was also something I never thought I'd survive. In the long run though it did happen for both my boys (my younger son is also on the spectrum and somewhat lower functioning than his brother.) Diapers went on for years longer than you'd wish, but in the end we used the "no pants weekend" method and it worked. (Literally, no pants, no diaper, rent a carpet cleaner in case of accidents. Sounds odd but it works.)

Don't give in to the despair. It's hard, I know, but progress happens at its own pace and it does happen.

Elycion wrote:

Don't give in to the despair. It's hard, I know, but progress happens at its own pace and it does happen.

For parents new to the autism diagnosis, it's real easy to succumb to this. It can be a tidal wave of emotion when you start wondering...

...how your child will make it in their adult years without you.
...if they will be bullied.
...if they will have friends or live a solitary life.
...if they love you because they don't express it or even if they know what love is.
...if they will ever find love and receive it from someone not in their immediate family.
...if they will have children and know unconditional love.
...who will take care of them when mom & dad are gone?

There's lots of other things to wonder/worry about but for me those were the whoppers. It had sort of a debilitating affect on me where I couldn't sleep and would spontaneously cry in the middle of the day.

It's natural to feel these things and worry about them. You wouldn't be a good parent if you didn't. All I can say is talk it out with your loved ones and give your kid a chance. Just because they might be non-verbal and show no facial emotion, it doesn't mean they don't feel and think. They yearn to be loved just as much as anyone. They just need a positive support structure and parents who are up to the task of getting to truly understand them. I no longer worry about these things for the simple fact that my son has made so much progress he is for all intents and purposes a neurotypical child. He has his quirks such as being more routine driven than most kids, his sensory issues, and his pragmatic speech issues but even these things are gradually getting better. And he just turned 4 so the future looks incredibly bright.

One other thing wifey and I worried about was the statistical likelihood that a sibling born after a child diagnosed with autism has a considerable chance of being autistic as well. We decided that more than anything we wanted a second child, partly because we didn't want our son going through life alone. I'm happy to say that so far (10 months) our daughter Maya is neurotypical. It is a stark contrast to how Émile was through his first 10 months. And the two of them get along famously. He is a fantastic big brother and never misses an opportunity to give her a kiss, a hug, or give her a toy if she looks bored. And she absolutely adores him, her face lighting up every time she sees him. So don't be dissuaded if you're thinking of having another. All signs pointed to a repeat (son's diagnosis, we were 3 years older than when we had him, we're both packing some late 30's extra weight, etc.) but we beat the odds.

IMAGE(https://lh4.googleusercontent.com/-Idg4DuJRGkw/UZtxnmc-qlI/AAAAAAAAEgk/yPl8FFP2H3k/s800/2013-05-12%252010.51.20-1.jpg)

For background, I'm one of the "therapists" you guys often see, going out to family homes and working with kiddos 0-3 (many w/ ASDs) a few times a month for the state's early intervention program. I'm a behavior specialist, though I work with low-level speech, sensory, and physical problems that aren't severe enough to warrant full SLP, OT, or PT support occasionally as well. Just wanted to chime in and say one of the first things I do with parents who may be or have recently received a diagnosis is connect them with the local autism society. There's nothing that can replace the understanding and perspectives of someone who has been where you are before. Definitely take advantage of the offers for PMs! This thread can help and there's good advice here, but it can also be very helpful to meet with parents for playdates for socialization for both your little one and for yourself. I'll also echo some of the above sentiments re: demanding quality from therapists who work with your little one. The quality of therapist you get is a total crapshoot, but there are enough great ones out there you should never have to put up with second-best.

FSeven, your children are beautiful!

Amoebic wrote:

FSeven, your children are beautiful!

I completely agree!

stupidhaiku, thanks for your input. The therapists and paraeducators my son saw through EA helped him so much. I really, really appreciate the job you do.

Here's my news. We have an official diagnosis: mild (level 1) ASD and pragmatic language disorder. We spent all day in the university center for disability and development getting this done. No surprises; it's what my husband and I knew in our gut. We're getting our son a lot of support and were planning for this, but this really does make it more real. Still. He made friends with an 8 year old boy with ASD during our lunchbreak and I had a good talk with the boy's mother about what they've done. That helped a lot. It was also really, really sweet to see my son pretend-playing with the baby doll during the ADOS this afternoon. He was very good at feeding the baby, bathing her, and putting her to bed. As with FSeven, my little girl is 10 months old and developing typically. She is so much more engaged than my son was at her age. She thinks he is awesome and he really loves her. Kind of funny how many things our families have in common, FSeven!

Here's a picture of little sister:

IMAGE(http://farm4.staticflickr.com/3771/9524771901_051c5a004e.jpg)
006 by rosmarinaus, on Flickr

and big brother:

IMAGE(http://farm6.staticflickr.com/5456/9527550362_667a6c3de3.jpg)
010 by rosmarinaus, on Flickr