Newbie - advice about ages & stages please!

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Hi everyone. I'm new on here, as I'm rather new to autism. My 3 1/4 year old son has just been diagnosed as ASD (mild). Although we have always known our son is different to most other kids, it's still a bit of a shock, and we've been through some emotional turmoil as a family as a result. My thinking now is that OK, we knew he was different, all they've done is define that difference for us in a way that might get us some help.

However, now we have a diagnosis, I'm trying to do as much as I can to understand what it means for my son, and I'm struggling, which is where I need the help of all you more experienced parents! I have a stack of books next to me from the library about Aspergers/ASD (Eating an Artichoke, Tony Attwood's Complete guide, Making sense of the unfeasible, Hitchhiking through AS, Look me in the eye etc). The trouble is the more I read, the more frustrated I get that I don't *really* recognise my son in these books.

A bit about my son: my boy is prone to banging his head when he tantrums (which used to be daily, but nowadays is probably once a week or so), has significant speech delays (he does talk, plenty, but isn't always very clear and uses some jargon), has good understanding (eg following instructions), likes people and playing with others (but I'm told uses less eye contact than is usual, and I have noticed he isn't very good with people's names), uses imaginary play. He doesn't get influenced by his peers (e.g. he won't join in a group of other kids unless they are doing something he wants to do) and is relatively unbribable (except with winegums!). He probably has some sensory issues around touch - he is not sensitive, just likes to lie on the floor while he plays, and pinches his knuckles when he goes to sleep. He is a terrible eater (food has to be crunchy, dry, not mixed up, that sort of thing), despite being a good eater when he was younger. He isn't clumsy, has a good sense of direction, but isn't good on selfcare (still only partly potty trained, and not interested in dressing himself etc). He loves cars and trains, and will play with them for hours, and lines them up (but that is hardly inappropriate). He also likes to jumble stuff (preferably hard stuff like lego in a box, or train track, or swiping wooden blocks off a shelf) - I think this is something sensory or stimulatory too.

So, my confusion is around this: is my failure to 'recognise' my son in the ASD books because he is so young? That is, as he gets older will he start to display more of the classic ASD features, or will the ones he has like delayed social development, just get worse? What has your experience been?

Or is it because he is maybe only borderline, whereas the people prompted to write books about themselves or their family member might be further along the spectrum? in which case does a mild case at age 3 stay that way? (is that the same as my first question? I can't think very clearly about even that right now!)

Or should I take it as a sign that maybe the experts haven't got it right, and question the diagnosis a bit more? It will be revisited in 6 months anyway, after some SLT and occupational therapy, which will be useful whatever the answers to my questions.

If you've made it all the way to the end, thank you and please let me know what your own experience as a parent has been!

welcome to wp, dazednconfused =) the majority of the traits you share are things i also see in our youngest, diagnosed classic autism. you certainly describe enough diagnostic traits to put your son on the spectrum.

my youngest is 5, right about an even 2 years older than your son. in the past two years, we have definitely seen an increase in the autistic behaviors he exhibits. some of that is from changing expectations, things that were ok at 3 are not always expected at 5, yet he is still showing those younger behaviors, such as attention span and ability to sit still. as they grow up, social demands increase, so we often start to see those social deficits stand out more, and i have seen this with both my youngest and oldest. my sons sensory seeking behaviors have also grown, he is always laying on the floor, too, and very tactile so he touches absolutely everything when we go places, and oral as well so its not uncommon to find him licking things or putting objects in his mouth (particularly metal objects, he cant leave my SOs socket set alone, loves to suck on them).

autism does come in many shapes and sizes, so i wouldnt be overly concerned if you dont see particular traits that you read about. just be thankful thats not one of the challenges your son faces, for now =) two of my three boys are on the spectrum, and my SO as well. my oldest is considered asperger's while my youngest and my SO are diagnosed classic autism. my youngest is a mini-me of my SO, they are sooo much alike, and their autistic traits are very very similar. my oldest actually has a different father, and he has a different set of traits than his brother, with some overlapping. the boys' eating issues are very much the same, and both have sensory issues but completely different ones. self care is somewhat similar but less problematic for my oldest. their social proclivities are opposite, my youngest doesnt want to socialize at all while my oldest loves it just isnt very good at it. they are alike in many ways, but very different in others, and yet both still on the spectrum. aspergers is often considered the same or very similar to high functioning classic autism, but in my house the two show very differently. there is a stickied thread up at the top about kids with classic autism, pdd-nos and speech delays, you may want to take a look through there and see if you see more familiar things than what you are reading in the books.

self care is something that you will really have to wait and see on, since at 3, we dont expect them to take care of themselves much. as he gets older, you will get a better idea of his abilities. i will say that my SO still has deficits in this area. i often have to remind him to put on clean clothes, sometimes even to bathe, as he doesnt notice his own body odor at all. he doesnt think about having to do any kind of personal hygiene (brushing teeth, shaving, etc), it just doesnt occur to him most of the time. he still has low registration of his body's sensory signals, so even toileting can be challenging for him as he tends to not realize he has to use the bathroom until the need becomes urgent. some of these things you will be able to avoid by using a written schedule for bathing, dressing, etc, and when instilled in them as children it should be easier to follow that schedule as they grow into adults. my SO wasnt diagnosed until after our youngest, so he never even knew the cause of these challenges, much less how to overcome or adapt for them.

there are a lot of gains to be made for your son, dont think i am saying nothing but doom and gloom =) it has been an amazing trip so far watching my little autie grow, and he astounds me every single day. while we see an increase in autistic behaviors, we also see huge increases in his abilities as well. the simple fact that you know what is going on with your child gives him such a positive outlook.

Welcome!

You may not recognize your son in those books but quite honestly, your description sounds nearly identical to my daughter at that same age. She is also an Aspie. I think much of the literature clings to a stereotype that just doesn't hold true. Tony Attwood's books seem to be the most inclusive - meaning he embraces the spectrum as a spectrum. there is no one size fits all picture of what Asperger's does and does not look like. All those traits you described sound very Aspie to me. My daughter has always been very outgoing and friendly - very willing to meet people and make friends. The problem is always in the follow thru - with the conversation and when one-on-one play began.

Your son is just different. He sees and experiences the world a bit differently than you. He may have other issues that are common in autism such as sensory sensitivities, ADHD, coordination issues - there are quite a few things that all add to the spectrum diagnosis. But take heart! It is not the end of the world and, in my opinion, not something to mourn or be afraid of. You have a boy that sees things differently. You may have to explain things you take for granted - like emotions. He may feel them but not have the proper name for them or understand how to express them. You can teach this just like you would teach anything else. He may mature much more slowly than other kids. My daughter is now 9 years old - she has the maturity of about a 6 year old yet her academic abilities are on par with her age group. Don't ever doubt that he ISN"T smart. There is a good chance he may be smarter than you! Just because he takes your words literally, does not mean he is dense in any way. If you tell him to 'throw his socks on' and he sits there trying to throw his socks onto his feet - you will know why. He applies the literal meaning to words. With a little practice, you will catch yourself when you do this - and adjust and give him clear instructions. Many kids are very rules oriented and have a strong need for fairness and justice. Knowing that you can often times use it to your advantage and also use it to dechiper situations that may make little sense to others. An Aspie will be the first to point out inequitable applications of the rules - a trait that gets more than a few in trouble once they start school.

Your son is young - if you have early intervention services available to you, I'd encourage you to utilize them as much for your son as for yourself - so you can learn. Aspies can grow up to lead productive full lives but especially when given loving understanding support at home and during the formative educational years. If you raise your son with the expectation that he will go to college and have a career and meet a girl and live a happy life he will be MUCH more likely to BELIEVE IT and make it happen for himself. If you treat his Asperger's like a life sentence that is somehow robbing him of life and your family of all their hopes and dreams - he'll believe he is nothing but defective burden on society. Reap what you wish your son to sow! Stay positive! This is just a challenge - for him and for you. It's an unexpected journey for you both but, as the old saying goes, 'the journey is more important than the destination'. There can be just as much joy if you let it in.

ASD's tend to get more prounced as we get older. When I was his age, I banged my head on the floor too and I have a ASD dignosis at 8 years old. my best advise to you is look for his gifts and build on them, while accepting and working on his weaknesses. It is unusual that he was diagnosed so young, but that is a plus cause earlier intervention is the key, I hear.

Most of the books are geared for those diagnosed during school years and beyond.
Also remember that autism is a not a cookie cutter thing. check the site out, you will find we are so different from each other some of the time, other times we are amazingly alike.

I have always been somewhat social and very imaginative. Now I am an artist and poet...my gifts give me strength.
Even though I am social...it is always more of a guessing game than a knowing how to socialize. I push this button and see what happens kind of social reasoning...if it works...repeat.
I do have severe problems with planning and daily living skills due to exceutive fuctioning dysfuction...which for me is very hard to cope with.

He is too young to develop those skills or lack therof.
any questions?
feel free to pm me.

Jojo

azurecrayon, draelynn, jojo thank you so much for your replies.

It is reassuring to hear your thoughts - to know that he resembles your daughter at the same age is probably just what I needed to hear, draelynn. And to know that other behaviours do develop as they get older is very useful - I thought they might, it makes sense, but I couldn't find it written anywhere in black and white.

We will be getting as much help as we can as soon as we can (we hope to start next week with therapy, and will have special ed come to our playcentre to help there too.) I do have high expectations of my son - he IS smart (his first clear words were 'one two three four five', and he has a prediliction for shapes, numbers, colours), and he is also charming, sociable, kind and has a good sense of humour. But then I am his mother, so I'm bound to be biased

I'm certainly glad that I found my way to Wrong Planet. I'm sure I'll be coming here again with more newbie questions soon, and in the mean time I'll read the other threads.

I'm tempted to ask my boy to throw his socks on tomorrow and see what he does!! !

He may be more Classic Autistic and High Functioning than Asperger's or he may start to show more typical Aspie traits as he gets older....I agree with both of these theories. I have a daughter with Classic Autism and a son with Asperger's. My daughter was very typically classic autism at your sons age, she was dx as severe right before turning 3, but she is now considered High functioning after years of extensive therapy. My son had just turned 6 when he was diagnosed and is now nearly 9 and he is very classic Asperger's however when he was 6 he outwardly appeared more ADHD with sensory issues. It was some of the "odd" answers to her questions and his "pendantic" speech that convinced the psychologist that he had Asperger's. Between 7 and 8 years it became obvious to everyone that he is very atypical Aspie even though he does want friends (some of the books say all aspies want to be alone) he has extreme difficulty in this area.

It's really hard to tell at that age. My daughter was well behaved but exceptionally high maintenance. Compliant and cooperative but very easily upset by changes.. needed a very structured routine.. frightened easily.. preferred to play alone, very emotional, etc I was home with her and we opted to home-school bc of this as well. So for us the reality came a bit more in the form of .. what was age appropriate at 4 is still here at age 10.

And for the past year she is home schooled out side of our home and is struggling horribly within a group of 5 including herself. It's small group with lots of personal attention and all of her school work is tailored to her learning style and ability. Should be a breeze for any average kid but for her the stress is huge.

So it is a bit of wait and see what develops kind of deal. I mean its normal for a child of 4 to take things literally, have a hard time with sarcasm, not understand joking around, and make up jokes that just arent funny.. but my 10 yr is still this way. These are simply skills / traits that she did not develop like most do.

Dear DazednConfused,
I hear you about being overwhelmed with a pile of books and too much information! And all of it does not apply each child with AS.
My son was DX AS at 15. I regularly searched the web and regularly felt panicked! But since you know your child best, you can play up their strengths and be on the lookout for ways to handle weaknesses. WrongPlanet is wonderful for that! I love to hear the suggestions for how to handle various issues.
Though I had to take my son out of school at 16, he's 18 now, he is doing great. He has a great therapist and social group that he loves. He also is creative and writes poetry and stories and is part of a teen awareness group that presents at area schools about kids with autism. He will get a diploma from an online school and will take college classes in computers and video game production.
I encourage anything that he is interested in. But he STILL needs to be reminded to shower, brush teeth,shave! Early intervention and me following thru with a schedule would have helped. I'm glad you were made aware early. Just don't trust that the schools will always give him all he needs. Get an IEP! I never heard of one until it was too late.
Our kids may change the world one day!