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Hello! I am so excited to have found an *active* online forum for ASD, both parents of ASD kids and individuals with ASD. We are starting our road to possible diagnosis for our 3.5yo son. Already I am feeling overwhelmed and lonely on this road with push back from family and friends. I am hoping to find some kindred souls here, especially other parents who are figuring out how to best parent their little ones with ASD.

I will add some specifics in a separate reply to keep this one post from getting too long, but suffice to say that for more than two years now we have had a nagging feeling that our little boy was dealing with something outside the "norm". Even though many people told us to wait and see or that we were overreacting, we are now to a point where the issues are staring us in the face and making our home a not-so-happy place. While we absolutely love our son to pieces, we have been at a loss as to how to parent him and reach him. Sometimes it is though he is on another planet...far from me. He wants us to reach him, and we want to help him. We just can't figure out the right tools to help him. So for now, we are just trying to give him all the love and understanding we can.

Monday is our evaluation with the school district and I am apprehensive. While I know what we are dealing with at home and socially, I worry that they will miss all that in a 2 hour meeting with us. And from what I have heard from other parents, that is a distinct possibility. At the very least I hope this opens a couple doors to us for finding other resources and specialists. The only official autism clinic in the state is 7 hours away, and the university here only does a clinic two days a year. I feel like I don't know where to start to find a private evaluation and everyone I have contacted has been a dead end.

As for myself, I am a mother of two and have been married for 6 years. I find myself almost "on the spectrum" in a lot of ways and still struggle socially and emotionally much of the time. I cobbled together my own coping skills long ago to deal with life since my parents decided not to "label me" even when they were told I needed help. But I suppose they did the best they could at the time and thought they were doing the right thing. My "other half" is a social butterfly, which makes us a funny pairing.

I look forward to contributing here and finding support.

A few of the things we have noted in our son are in the list below - this was sent to his doctor and to the evaluation team as well. This isn't everything we have noted, and doesn't focus on the positive. For instance, his memory is suburb and he can do 48-piece puzzles very quickly (which I am told is unusual for a three year old). I do *not* focus on the "negative" with him on a daily basis, but as this list was made when I was asked to show areas of concern, it obviously focuses on what concerns me, not what I am super proud of. I wouldn't trade him for the world.

1) Lack of consistent eye contact ? sometimes refuses totally to look into my eyes, other time the contact is fleeting or to the side. Eye contact is better maintained when he is speaking about something important to him; contact at its worst when he is in trouble or is anxious.
2) Does not consistently respond to his own name and never has. Normally it takes at least three times to get his attention, sometimes more. This is not just an issue during TV time or playing on his tablet (which is more expected), but is an issue all the time, at home and in public. Even as a baby he did not consistently respond to his name.
3) He only began to point around his third birthday, and only from being taught to do it. He still forgets to point often and needs to be prompted. For instance he will repeatedly say, ?What?s that?? without pointing or gesturing. I have to remind him to point when he asks or he will just repeat the question over and over again.
4) Until after his third birthday he called me (his mother) ?Gig-ga? ? we have no clue as to why. He said ?mama? a few times as a baby and then stopped. It took me months to figure out that the sound ?gig-ga? he was making was actually his word for me. No matter how many times I corrected him (and never used the word myself), he continued to use ?gig-ga? and could not articulate why. One day, he just stopped using it and started saying ?Mom?.
5) Every couple of months he adds a made up word to his vocabulary that we cannot trace back to any object or other word. He attempts to use it in conversation (usually by asking for whatever this word is). Sometimes he gets very upset that we don?t understand, but many times he just continues asking or talking about the word and doesn?t seem fazed when we explain that it is not a real word/object. These words fade away only to be replaced by a new one.
6) When interacting with others he tends to touch the face or body and has no understanding of personal space. For instance, when greeting a child he doesn?t know at the mall play area, he will frequently touch their face or try to grab their hand while saying hello. Other children do not take well to this but he does not seem to understand that even after many, many explanations. He touches adults too, but not as often ? though he does have a habit of turning an adults face (with his hands) to look at something instead of waiting for a response.
7) Overly interested in physical play, especially when anxious or excited. His favorite form of physical play is to put his head down (like a bull) and push his head into people or objects. He also likes to lay on people or roll on people, or sometimes sit on them. Conversely ? he does not ask for cuddles very often, though he will give (rough) hugs.
Despite constant reinforcement, the rules of social play escape him ? turn taking and asking for turns. He grabs toys/objects constantly. While this is obviously also a typical ?toddler problem? he seems to have no understanding of why this is wrong or why he should give items back, usually resulting in a meltdown.
9) Two particular physical behaviors that he repeats ? one is to spin on the floor on his knees (sort of a head down, jumping circle on his knees, very fast), the other to do a circuit of the couches/small living space. When upset or anxious he does these at a frantic pace, and if interrupted with fight very hard (flailing with entire body weight, kicking, yelling).
10) Self-regulation in all areas is an issue. He cannot seem to slow down and flits from one thing to the next. He cannot slow down or stop physical play, even when the other party (usually his baby brother) is crying or otherwise upset. He is unable to wind down to sleep on his own and will stay up well past midnight if stimulation is not removed. Once in a meltdown, physically removing him from the area and all stimuli is generally the only way to stop things.
11) We were overjoyed when we thought he was finally beginning pretend play (after the age of three), but we are beginning to notice that his play is scripted. If the toys are from a movie/show, then the characters always do the same story again and again. With more open-ended toys, such as a baby doll, he only repeats the actions that have been shown to him or modeled. We have not noticed any original story lines or ?out of the box? playing.
12) Does not pick up on social cues. For instance, when entering a room where children are all watching a movie he does not realize he is meant to be quiet (even though it has been explained ahead of time) and sit and watch as well. When others are sad or mad he doesn?t seem to notice. Does not pick up on annoyance at all and yelling rarely gets any emotional reaction from him.
13) Back and forth conversation is lacking. If the topic is of interest it is a little better, but eye contact and following the flow of conversation is difficult.
14) Meal times are virtually impossible. He sits long enough for one bite before trying to get up and do something else. At times, I have to sit and feed him just to get him to eat a good portion of a meal. Limited diet.
15) Almost no desire to help with chores and very fleeting attention span. The only household item he actually follows through with is setting the table for dinner. However, we cannot change seats or plates/napkins or he gets very upset. For instance if we have soup and I fill the bowls at the stove and put them on the table he is upset that a) he didn?t get to set the table and b) that we are using bowl instead of plates. If we run out of napkins he gets upset because he then doesn?t want to put down the forks without the napkin. Picking up toys has always been an issue ? we have to literally go object by object and remind him to stay on task between each toy.
16) At times he uses facial expressions that do not match the situation ? for example, being in trouble and being told that he hurt his brother (who is crying), but August will smile instead of look remorseful.
17) Uses ?scripts? from shows and movies often. Sometimes it is singing, but it is also phrases. A recent example is the phrase ?Can you do me a favor?? He will repeat this over and over again, but does not understand what a favor is or even realize it is supposed to require me to respond. These ?scripts? usually involve pacing.
18) When excited, he paces around on his toes.
19) Extreme distractibility
20) Many people tell us he has an unusual pitch/melody to his voice, ?like singing?.
21) Once we show him how something is done one time, he assumes it must always go that way. Meltdowns occur over these issues pretty often.
22) Prefers routine and does not do well with changes in routine. (shows anxiety or acts out)
23) Tantrums ? these include throwing things, rolling on the ground, etc. Unable to self-soothe or to be soothed by others.
24) Cannot follow three-step directions. Two-step directions occasionally work. If the two items are unrelated it is much less likely to be finished.
25) Does not seem aware of the consequences of actions to himself or to others. Does not seem to care about the feelings of others.
26) ?Zones out? when spoken to (glassy eyes, averted gaze, no response).
27) No impulse control.
28) Difficulty with transitions.
29) Does not learn from past behavior, will make the same behavior five minutes after a consequence.
30) Visual cues seem to help much more than verbal ones.
31) Covers ears often ? common issues are toilets (especially public ones), vacuums, and sometimes in crowds.
32) Overstimulation is an obvious issue. The worst meltdown from overstimulation was on a recent trip:
a. He expressed interest in the Rainforest Café, so we decided to eat there for dinner on our trip in MN. As soon as we set down, he began to express concern over the lighting and noises. We tried to explain that the animals (which did not scare him the store portion of the place) were not real and the noises were all make-believe. A ?rain storm? started just after we got our drinks. He covered his ears so tightly that my husband could not move his hands, balled up in his seat, and began to rock. He kept repeating the same phrases (?don?t rain on me?, ?I don?t like the rainstorm?). We had to physically pick him up (still covering his ears and balled up) and move to a table on the edge of the seating area near the mall entrance. For the rest of the meal he was anxious and between most bites he would recover his ears even though the noise was reduced. (*As an aside, it was this instance that spurred us to get an evaluation after over a year of questioning if his behavior was just ?quirky? or if it was something more*)
33) Very clumsy as always has been, seems to not respond as quickly to pain or falls, sometimes there is no response at all.

Hey RocketMom welcome.

Rocketmom... It's a rough row to hoe... Neurotypicals and Aspies can have some serious communication problems, but once we all learn the ins and outs of these communication issue, it does get better... you are in a prime position to help your son with issues that most of us had to endure... you can be his translator... You can explain the NTs to him... non-optional social constructs and "why did they react like that" moments...

I write a blog that is pretty much just about this. You can find it HERE I hope it helps you out.

welcome to the club!

Welcome to Wrong Planet!

Hello and welcome to the WrongPlanet.

Welcome aboard!