Autism Spectrum and Other Delays

[Aryn]

Oh boy.

So K has what we thought was a speech delay (about 15 words at 27 months) so we had him evaluated through our state's Early Intervention program. The developmental specialist wanted him to be evaluated by a psychologist - I thought to rule things out. Well, the psychologist says he is on the spectrum - probably some form of PDD. (Not an official diagnosis yet, just a preliminary guess.)

He has some social/behavioral stuff going on - such as not following directions, making eye contact appropriately, or even responding to his name a lot of the time. We had chalked it up to his just being "stubborn" but it seems like there's something more to it than that.

He's really a smart kid, he can feed himself with a spoon perfectly, put together puzzles, stack blocks like a mofo, and identify (but not say) most of the alphabet and numbers 1-10. But he won't say "Mama".

We looking at probably ABA first and then some other therapies... depending on what he qualifies for.

Let's talk about this. What are your experiences? (and I don't have all the terminology straight yet... forgive me if I've said something incorrectly.)
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[Crumb]

Not to in ANY way try to question the specialists' thoughts, but: Have you had his hearing checked? Mr. Crumb had a language delay, including not responding to directions or his name, and it turned out that he had a pretty significant hearing impairment. Forgive me if this is something you've already looked at and ruled out - I don't have any experience with the autism spectrum.

And hugs to you and your family - I'm sure this is difficult news to navigate.

[Aryn]

Thanks. It is a lot to process, but we're glad we're able to get him the help he needs early. (The EI program is completely free, which is amazing and great.)

Haven't had his hearing checked recently, but I'm sure it's fine. He comes running from the other room if we turn on the tv, can hear the train rumble by from several blocks away when he can't see it, etc. We've considered that, but there's definitely something bigger going on.
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[Athos]

What are ABA and PDD?

You are in NY? I am in NJ and our state's Early Intervention program is fantastic. Even if it turns out K is not on the autism spectrum, it will only help his development to do early intervention. In NJ, kids age out at 3, so you may have a short window to do early intervention. Take advantage of any services like that which are offered. In NJ they are sliding scale or free.

My understanding is that truly diagnosing this stuff is tough at the age you are talking about. Is he doing any of the destructive things associated with autism? Is he showing attachment to any people, despite the lack of eye contact?

I have to run - very limited naptime window with my toddler. But lots of support to you and your family.

[kitchen]

not a parent!

but i work in the developmental disability sector for an agency that does our provincial run early intervention, ABA, IBI, occupational therapy, behaviour, developmental therapy etc. programming.... take my yammering with a grain of salt as i am on the admin/office side now so i no longer work directly with the kiddos, i'm just mired in paperwork and bureaucracy.

i definitely echo Crumb's suggestion... our Early Intervention Services include Audiology, and it's mandatory for all kiddos who are being referred to our speech & language program. even if he is responding to noise, it's a good idea to get it checked out, there could be frequencies that trigger certain behaviours etc.

it's definitely difficult to diagnose within the spectrum because PDD & ASD are presented in vastly different ways amongst kids, some kids are super "high functioning", will never need to be in a diagnostic classroom, may need some social skills therapy and that's it. some of our kiddos don't show any "destructive" behaviours at all.

i'm sure you've gotten a full intake assessment with your EIS worker, but here are some of the things we specifically ask parents to look out for:

- regression in language: at what age? were skills lost? did skills return?
-adaptive functioning: what levels of self care does he do independently? dressing? undressing? toothbrushing? sleeping issues? toileting? preference of food texture or only certain foods?
- communication: is k echolalic? does he use language out of context? does he gesture? can he follow 2 step commands? (ie. open the fridge & bring the milk, please!) does he ask for things or will he indicate/bring you to things he wants?
- play/social skills: does he interact with other kids? does he share? does he play parallel to other kids? is there any imaginative pretend play emerging? does your child ever seem to be more interested in parts of a toy or object? (ie. spinning the wheels of the car rather than zrooming it around) does your child use his index finger to point? will your child imitate you? if you point to something across the room will your child look at it?
- behaviour/sensory: does your child bite/headbang/run away/kick/throw objects/tantrums? (we look at the recurrences of this behaviour). does your child have any behavioural triggers (noises, smells, lighting etc)? does your child have any sensory sensitivities? (ie prefers deep touch, does not like sirens, doesnt like haircutting/head being touched etc)?, are there any repetitive movements or vocalizations? (being fixated on a noise, hand flapping, spinning, etc). how does your child cope with sudden transitions?

of course there is more to diagnosing than just these questions but it helps to know.

regardless of all this, i think you're doing a really great thing with getting K into the EI program. even if he isn't on the spectrum, it's so so so important to recognize his developmental milestones and to get him into programs that are available to you, as soon as you can.

let me know if you have any specific questions you want me to ask my coworkers. and if you want, i can assemble a package of literature/resources i can mail you... though i'd def take it with a grain of salt until you get an official diagnosis.
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[Aryn]

[featherstoryaniweda]

Just sending some love and support here.

I have worked with kids on the spectrum, but I can't personally think of anything to add right now.

I'm watching my youngest daughter carefully too because she doesn't talk much and is almost 2, but I do know that some kids just aren't as verbal as others and it doesn't necessarily mean anything besides just their personality.
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[cake]

I don't have any advice because I don't know much about ASD/PDD but I just wanted to send some support your way. Thinking of you and K!
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[Aryn]

Thanks everybody.

I'm working through it, feeling much better today. The last two days I was pretty depressed.

We had an OT evaluation this morning (last eval, now we have to wait and see what he qualifies for) - and she was wonderful, and she LOVED K. She assured me that his PDD is mild (she does therapy on 0-3 year olds) and she said once we get him into therapy we will see great strides quickly. That was all really great to hear, I hope she's right!
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[dance]

So glad you clicked with the OT...that is so important! Early intervention is so important, and K is very lucky to have parents that are on board, curious, and ready to learn about whatever's going on.

I'm a preschool teacher, by way of background....so I don't have a ton of diagnostic information. But if you like and trust the OT, then politely pump information out of her. I teach 2/3 year olds, and the ones that come in my class already getting services, with open, communicative parents..................Aryn, the difference between those kids and the ones whose parents fight any suggestion that their child might benefit from some individual help are huge.
You rock for looking into this, and one of the best things you will be able to do for him is to listen to what these people say, and then honestly give feedback about how what they say reflects what you see in K. You know the real K, not the K that might feel kinda awkward and nervous in an observational setting. Your perception of his development is a really important element of this, so feeling like the professionals hear and respect your input is crucial. Follow your instincts and look out for your boy- that, coupled with advanced knowledge from professionals you like and trust, that's the golden ticket. You are a great mama, looking out for K like this.
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[Aryn]

Well, I just got the call. He is qualifying for everything. ABA, OT, PT, Speech Therapy. I guess I have a new full time job. It looks like it will be 4-6 hours a day of therapies.

I'm so overwhelmed right now, I didn't think it would be so much.

As I've been watching him these last couple weeks, especially this weekend when we were staying with friends who have a daughter the same age as K, he really is not acting the same as other kids. It's so hard to realize these things that I thought were great about him - playing by himself, being quiet - are actually problems. I've got a lot to work through.

They asked me if I want the ABA to be at a school/gym situation or at home, and I don't know which I should choose. I guess it will be good to be able to drop him off and have a few hours to myself each day - but I know that will be hard for him, at least at first, since he's been home with me for 2 years now. I think the other therapies will be at home, at least for now.
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[Pearliepie]

[PurpleDoor]

I don't really have anything specific to add, but I was thinking of this thread this morning and I wanted to drop in and give a little internet (((hug))) because you sound really overwhelmed right now. Hang in there, you will get stuff figured out.

[Aryn]

Thanks guys. I'm seriously tearing up here everytime someone replies.

As soon as we get his schedule worked out, I'm going to find myself a therapist... I always know it's time to find someone to talk to when someone asks me how I'm doing and I just start crying...
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[kitchen]

i cannot imagine how overwhelmed you must feel, aryn. sometimes knowing you're doing the right/best thing for your kiddo isn't enough to assuage the anxiety... but i'm sending all my strongest coping/healing/loving vibes to you and k and your fam! once his routine is set, it'll be so helpful for all of you guys and very beneficial for him too! you're doing awesome.

as for the ABA: our ABA therapists absolutely recommend group. we've only offered home based ABA to a handful of families (out of our thousands long waitlist), because of extreme behavioural concerns. a lot of our ABA programming focuses on social skills that are constantly reinforced within the group setting. the separation anxiety will be tough but ultimately it'll be good for k. there are heaps of wailing children being dropped off in the mornings but they all learn to deal with it in socially & age appropriate ways.

i'd check to see if your early intervention program offers parent counselling. ours does, free of cost. we have 1:1 parent counselling, group sessions, and also a website (connect * ability dot ca) for clients and parents in ontario to discuss things in an online forum. i'd definitely try to see if any of these types of things are available to you.

hang in there! k is happy and healthy and lucky to have a mom like you that is doing great things for him, all the time.
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