Lots of questions, not a lot of answers....

[Darkestlight]

I assume most of you on the board are parents of children with autism. So maybe you can answer some of my questions. My daughter hasn't been diagnosed yet, but we might be on the way to that diagnosis. She is 20 months old. She doesn't speak. She babbles. She almost refuses to make eye contact, and doesn't hardly respond to her name. She is having a hearing and eye check, im waiting for them to call me back on a developmental check and speech therapy.
So some questions....
When did you notice your child was different?
What were their symptoms?
What has helped them?
Anything at all you can tell me please do.

Thanks,

[888mom]

Oh, also wanted to add that the developmental pediatrician felt that our daughter has PDD-NOS (he said she was too young for him to figure out if it was typical autism or PDD-NOS, but that her symptoms were more mild than typical autism).  Forgot to mention that she is now 3 1/2.  SHe is in a developmental preschool with other children who have autism, verbal apraxia, and down syndrome.  The two other kids with autism are completely different from my daughter in how they behave.  They are also completely different from each other as well.  

I guess stating that there are such differences between children who are "on the spectrum", we as parents deal with different situations.  Some children have a lot more severe situations than what my daughter is dealing with.  So my daughter is happy because she is able to cope with things.  Some kids may not be able to cope since they might be farther along the spectrum.  Which means parenting would be a lot harder and having a normal child might seem a lot more appealing.  I just hope that I didn't offend anyone with anything I wrote above.  It is a hard thing to deal with as parents.  It's also a hard thing for our children to deal with too.  My daughter wants to be like all the other kids ... and she is at the age where kids are figuring out she is different.  There are kids who already are starting to exclude her from playground activities because she's "goofy" or "odd" or "different".  I can see that it hurts her emotionally.  And she does not have the language to talk about it.  I try to talk to her, though... she at least can answer yes/no questions now.  2 months ago she was not able to do that.  

I also hope my last message didn't make it seem like I don't think getting a diagnosis should be a piece of cake either.  yes, it is emotional.  There are ups and downs.  And questions later on like wondering if your child will ever be potty trained or ever talk like a normal kid or have friends and that sort of thing.  Our daughter is happy... and it is hard on us parents to balance the therapy and getting her to overcome some things versus keeping her mind the way it works and her being happy and then discipline issues... and making sure that we do not spoil her to make her happy and don't give in to her every wants.  Also wanted to state that, no, I am not in denial of our daughter's diagnosis either. Some of my friends (in person, not on the internet) accuse me of that.  

[888mom]

I have a daughter who was diagnosed with PDD at the age of 2 years and 22 months of age (2 months shy of turning 3).  

I didn't really have concerns about her differences (many she had since birth) since either my husband, myself, or one of our siblings had one or more of the issues.  I had bad sensory issues as a child and continue to do so as an adult.  Daughter has similar things and I have totally understood the sensory differences.  She does have some sensory cravings where I have sensory aversions, but I understand her well.  My husband has not always but has always been patient.  My husband was a late talker, had sensory issues that he never had therapy for but went away on their own as he got older (he didn't like being touched or hugged for example as a small child).  There is a history of language disorders on both my and my husband's side of the family.  So, everytime we had questions about our daughter's development, our parents kept saying, "she's no different than how you were as a child."  I guess the thing is, is that she's got all the symptoms combined, whereas us parents didn't have all of the things going on.

Daughter hated bathing from the get go.  She hated socks and hats on her from birth.  Seriously from day 1.  Managed to kick the hospital hat and booties off her feet continuously in the hospital.  By the time we got home, I just cranked the heat to 76 in the house and let her go barefoot in the winter and didn't go out much.  I was happy not to wear socks in the house as well.  :)  I hate socks and shoes.  Daughter also could not be put down without crying.  I know some kids hate being held but she wanted to be held all the time.  She wouldn't sleep in her own crib until age 2.  And even then we had to keep her in the same room as us.  At 1 month of age I bought a baby sling and she loved that baby sling.  I kept her in it until she was over age 1.  Not all the time, but often.  Her eye contact with myself and my husband was great.  With everyone else it was non-existent.  I thank the baby sling for her bonding with us.  

Language didn't come in until after age 2.  My husband didn't speak until after 24 months.  We didn't start worrying until the doctor at the 24 month checkup did the autism screening.  

Our daughter at the 24 month checkup was doing the following:
- not responding to her name ever
- not responding to any spoken words (total lack of receptive language)
- no spoken words, no babbling
- not able to point
- not able to follow your finger to what you were pointing at
- routinely flapped her arms, especially when excited
- constantly walked on her tip toes
- had a ton of sensory aversions and sensory cravings that affected her daily life to an extent that it created difficulties for her
- did not like change in routines and would have meltdowns if you deviated from the routine
- had problems changing activities
- lined up her toys
- was in to stacking
- still was not sleeping through the night consistently

At 2 1/2, our daughter started developing some serious ritualistic behaviors that were OCD like.  The stacking stopped around age 3.  She doesn't line up her toys much at age 3 1/2, but occasionally she'll have fun doing so.

Personally I don't see anything "wrong" with my child.  She's just "different".  Early intervention has helped her speech immensely.  For me, that is the biggest thing that I see she has problems with.  The ritualistic behaviors and sensory issues I know she is smart enough to learn coping mechanisms and techniques and with a family history of them... well, she has a lot of people to show her those things.  Has also helped the sensory issues a little bit (I envy her in that regard -- and I tried the brushing and joint compression techniques on myself for a few months and it did nothing... but i'm in my late 30s, so maybe I'm just too old for something--except an OT told me to take up swimming which if you as an adult have any sensory processing issues -- take up swimming -- it really does help).

Our daughter is still over a year behind in her speech/language development.  She still has the sensory issues and rituatlistic behaviors.  But she is happy and interacting with people and talking and learning how to navigate through life.  I don't see her as ever being "normal" and frankly I don't want a teacher or anyone trying to make her "normal".  I want her to be the unique and amazingly brilliant individual that she is.  The developmental pediatrician who diagnosed her was in a different state than we are currently living.  He once told us to be warey of special ed teachers and therapists who try to normalize our child -- he said that our daughter's brain works differently and if therapists try to normalize her, she will shut down and her creativity will disappear along with her happiness.  Frankly, I'd rather have a happy daughter than a normal daughter any day.

[Juliensabrina]

Hi there

I'm a parent of a 12 month daughter. She is being evaluated by her specialists at the moment as she is displaying several symptons of the Autism Spectrum Disorder. Her symptons are as follow's:

Resist's cuddles/affection (pulls away when you try to cuddle her).
Flaps her hands repetively in the air (especially when stimulated/tired).
Resist's when anyone touches her hands, she cannot tolerate her hands being touched (sensory issue).
Rarely interact's with anyone in playtime (prefers to be on her own).
Obssesses with an object (she will study very closely an object repetively)
Doesn't maintain eye contact.
Not pointing/waving, not saying any words - but babbles abit.
Obssession with licking things (sensory issue)
Rarely responds to her name when she's being called (if she is doing something).

These are the behavioural/development issue's that my daughter is displaying and her hearing is perfectly fine. I have recorded some moments of her behavioural issues for her specialist's.

I hope my feedback has helped you a little, I know how hard it is when you suspect that something is wrong with your child. It is very distressing and an emotional time for everyone involved.

Please keep us informed of you future result's

Julie.

[Mjthewritermom]

Hi!  I am a parent of a PDD-NOS young adult.  I knew something was wrong early on as she did not reach out to be held, was unresponsive to stimuli going on and babbled also at the age your child is.  The pediatrician made me wait till she was 2 before suggesting an assessment.  I had expressed concern by 18 mos. of age.

With the assessment came the realization that she was significantly delayed across the board.  I set up another assessment which led to tubes in her ears, but they explained that the hearing problems were not the cause of the global delay as it was in all areas, not just ones related to hearing.  Things were set in motion for early childhood intervention with someone coming into my home to work with us.

She wore her Johnson Johnson plastic toys and like to spin or pile up things.  That was between 18 mos. and 4 or so.  We went through a spell of her whispering after having her at a babysitters.  Not sure what caused that.  She shook her crib so hard it ended up coming apart.  I couldn't keep her in her stroller.  She would try to stand up in her car seat.  I was a basket case from having to go after her all the time.

At 6 she was finally diagnosed with the PDD-NOS after a team of Doctors, etc. assessed her at the Waisman Center in Madison, WI.  I knew she had hyperactivity as she couldn't sit still.  The peculiar behaviors were evident early on.  She was in her own world and developed a peserverance on bugs by 4 yrs. of age.  In restaurants she would get up and chase after flies, etc. Going into restaurants she would try to grab any bug she saw, turn rocks over......  I had never seen anything like it.  She played with her food and twisted, turned.....couldn't sit still.  She would go up to strangers.  When language began to develop it was peculiar....I was the "queen ant" or the "mom".  She talked about herself in third person form..."she....".  At a restaurant in CO. Springs, I remember her wanting to take the Chef home and saying to the waiter..."kill the man".  One phrase I remember clearly was ..."I, never, been done that before".  She must have been 6 or 7 at the time.  We had been trying to get her to refer to herself in the "I" form.

These are a few glimpses.  She writes in this forum as she is very verbal now and trying to learn how to fit in & find her place in life.  I like to hear her perspective and appreciate she survived our attempts to make her "normal".  

Each child on the autism spectrum is different.  I have at least 2 local friends with sons who are varying degrees on the spectrum and they are unique.  Common things are the social separation and attempts to get needs met with the frustration in having them met by acting out in certain ways.  

Higher functioning children and adults appear at first to be normal as they look normal.  It is when someone is with them day in and out that the traits of autism come out.  What works for one child doesn't necessarily work for another.  

I had hope when I went to the first MAAP conference in 1995 and saw for the first a number of adults who had been diagnosed later in age, fallen through the cracks during school years, as well as those who had been diagnosed and it was inspiring to see them learning to accept themselves for who they were.  Up to that point I had been trying to get MJ to be as normal as possible as if she had a disease.

Beth Moreno had made it through the school system and become more productive.  I met Temple Grandin at that conference (who sat near us while we ate and witnessed MJ eating with her hands & later made mention of it in her talk :-((()  However, Temple, told us at the table that autism isn't an excuse for bad table manners.  She shared how she had a co-worker who plunked down a can of underarm deodrant because Temple stank.  She got the message.  She also told us to let the work (ability) that each person had speak for itself.  Her ability opened doors that her odd behavior would have closed.

When we came back from that conference, I had a new outlook.  Not that I didn't get embarassed, etc. or have struggles with MJ's behavior, but at least the "frantic search for a cure" eased.  I realized that she was the same person, that there wasn't an "instant" cure.  The worries over her getting a disease licking her fingers or smelling things  and being blunt in telling people they stank or to wash their hands before serving food....... they were part of her.

:-}

[Sally44]

I didn't start to have my suspicions that something was not right until he was around 3 years old.  But looking back he was probably showing symptoms at around 2+.  What makes it hard to get your head around is that every child with autism is different.  But there are always difficulties in what they call the triad of impairments.  These are around language skills, social interaction and imagination.
If you google DSM IV autism you will see a list of behaviours and how many of them a child has to have to be on the spectrum.
But, for example, with language there can be alot of different things, but they will all result in having problems with language.  I will list some to give you an example.  
Appearing deaf when their name is called when there is no hearing loss.  This can be down to focus and how autistic children can screen out all other people and environmental noise when they are focused on something they are doing or thinking.
No language.  Some cannot use verbal lanuage for years, others may chatter all the time without any real direction or meaning behind the words.  My own son was putting together 2 word combinations at age 2+.  Then he started repeating back what I said to him, kept mixing up pronouns, would give a totally unrelated answer to a question, used alot of echolalia.
When these children are older and are tested for language comprehension, semantics and pragmatics etc they usually show alot of difficulties in these areas.  So they tend to take language literally and cannot pick out the key information from conversations or stories.
Many children also have sensory issues and react negatively to visual stimulation, light, noise, smells, touch, taste etc.  Or they may seek those sensations by making alot of noise, smelling or mouthing things, staring at mirrors or shiny things etc.
When younger they may not respond at all to other people, or they may respond with fear if an adult tries to pick them up.
There also tends to be a need for routine and structure because they don't have flexibility of thought or imagination.  My son hated leaving the house because he didn't understand what that would involve so he tried to avoid it.  He likes to watch TV and doesn't like to turn it off half way through a programme.  He has no understanding of time.
As toddlers they tend not to crawl or climb.  Some don't point or bring things to show you, however my son did.  So lots of physical activitiy involving crawling and climbing is good, so it swimming.
I also found a Play Therapist that works with autistic children and she was very helpful in getting my son to enjoy interaction and play.
You are right at the beginning of the process, which is very daunting and worrying.  But if your child is on the spectrum then the sooner any therapies start the better the outcome.

[paranoid_cataclysm]

Well I'm not a parent but I have Autism myself.  No one seemed to figure out I was Autistic until later in life.  I think one of the things that will really give it away is looking like they're in another world and a lack of emotional responses.

Here's a list of some symptoms.

http://www.mayoclinic.com/health/autism/DS00348/DSECTION=symptoms