Living With Autism – Early Signs and Diagnosis #Autism #AutismAwareness

We have a daughter with autism.  I remember when saying that used to be hard for me to say.  I have mentioned our daughter in some of my posts throughout the years but this is the first time I decided to really write about it.  April is Autism Awareness month and I have been reading some blog posts over the last few days and I got inspired.  Not only from these posts, but also from the parents that wrote them.

I want to focus this post about early signs of Autism and what our daughter and we as parents experienced long before her diagnosis.  I want to do this because there were a lot of signs that we didn’t realize were signs until years and years later.  She was our first baby and I was only 20 when I gave birth to her and her dad was only 21.  We didn’t know anything about autism.  We had never been around it and had never seen it.  Both of our families had no idea either.  She’s going to be 16 this month so it’s been a long time since she was little.  Her pediatricians she had over her first 4 years of life never mentioned anything or shown any kind of concern.  I don’t know if it was because it was that many years ago or if we just didn’t have a good doctor.  By the time she was almost 5, she had a different pediatrician and even then we didn’t go through any testing until she was having difficulty in Kindergarten.

So after she started school, her teachers expressed concerns to us about halfway through the school year.  This was about the age she started having struggles that was clearly obvious and made things really difficult for her.  This was also the first time we really thought there may be something going on with her.  So we took her to the doctor and she got a referral to Children’s Hospital for evaluations.  It was a long wait for testing so while we were waiting on that she also had referrals to see a psychologist, psychiatrist, counseling and other testing.  She was also visiting her school counselor at times while at school and her elementary school was amazing with working with her setting up interventions, an IEP, and doing everything they could to keep her in a regular classroom.  She first got a diagnosis of Pervasive Developmental Disorder and a few months later another diagnosis of Autism.

Now I am going to rewind a little and get back to the early signs now that I have given a little background.  In the next few days or so, I’ll probably write another post continuing from the background story above.  Early signs can be noticed before the age of only 3 years old.  Signs can also be noticed during infancy.  If you notice your child having a lot of signs and continue to notice more and more, you should talk to your pediatrician as soon as possible.  The earlier the diagnosis, the earlier intervention can begin.  Some children may show some of these signs but keep in mind, that doesn’t necessarily mean there is a problem.  Just keep observing and when you feel it may be time to talk to a doctor about it, do it.

Signs as early as infancy

Smiling and laughing.  Babies tend to smile back at people especially parents at a young age.  By the time they are 6 months, most of them may laugh or squeal. If your baby is not that often, it doesn’t necessarily mean anything.  Some babies smile and laugh more than others.  But if your baby isn’t smiling or laughing in a response to you by the time they are 6 months old to a year, it may be an early sign.  Our daughter smiled a lot but not to any particular response.  She did every once in a while but normally when we were playing with her, she would be distracted by something else or she just didn’t respond in that way.  Along the lines of being distracted, right from the start she didn’t make eye contact that often.  Babies are often curious and are interested in faces.  Our daughter wasn’t that interested.  She would coo or babble at us without looking at us quite often.

Babbling, making sounds, or vowel sounds at around 6 to 9 months.  Our daughter met that milestone and she did babble and make sounds but not as many different sounds or variations of the babbling.  So even though she met that milestone, she was still a little lacking in that area.  But this is also one of those things that doesn’t necessarily mean it’s a sign of anything.  Some babies just take longer than others.  This is one of those things to pay attention to if there are other things going on too.

Moving past infancy

Repetitive movements.  This is called “stimming”.  These are behaviors to stimulate senses.  Some may blink their eyes repeatedly, shake or flip their hands, bang their head, rocking back and forth.  Our daughter always rocked herself.  From the time she learned how to sit up, she would just sit there on her bottom with her hands on the floor in front of her and just rock back and forth.  It didn’t matter what she would be doing.  She could have been playing on the floor and just stop and start rocking.  She didn’t grow out of that until she was about 11 or 12 years old.  After she grew out of that, she started rubbing her lips with her thumb. 

Lack of words/not speaking.  If by 16 months your baby isn’t saying any words, this could be another concern.  Some children with Autism are non verbal while others do speak.  If your child isn’t saying any words or are only saying a few, this might be something you want to bring up to your child’s pediatrician.  This may also just be a delayed communication or speech delay.  Our youngest son had a speech/communication delay.  He didn’t say many words and he couldn’t communicate with us causing him to have meltdowns.  We worked with Help Me Grow (Birth to Three) and by the time he was almost 3, he had caught up to where he was supposed to be and that’s all it was.  Our daughter on the other hand although she did talk, she said very little.  She was only speaking 4 or 5 words even when she was 2 years old.  She was saying other things though that weren’t words.  It was like she was calling certain things by sounds rather than calling them what they actually were. Along with the speech delay, a child with autism may not be able to communicate in other ways either such as pointing or other gestures.  Our daughter didn’t have a problem with that though.

Being over sensitive or under sensitive.  Under sensitive means sound or touch may not bother them at all.  Not being bothered by pain, loud sounds, etc.  Our daughter is over sensitive.  Meaning she can’t handle wearing certain kind of fabrics, sock lines have to sit right on her feet, she does not like being touched and there were always certain foods she can’t eat because of the texture.  There was one teacher she had in the second grade that we just didn’t like.  All other teachers and staff were amazing except for this one teacher.  One time our daughter was hiding under her desk because she didn’t want to line up for lunch.  This was the first time she had ever done something like that but her teacher took it upon herself to put her hands on her shoulders and guide her over to the line after she finally came out.  She had one of her first meltdowns at school because of that.  The school counselor and school psychiatrist had a few words for her teacher.

Lack of wanting physical affection.  Even in infancy our daughter didn’t like to be cuddled.  She didn’t even take a bottle well if we held her while doing so.  We always had to lay her on a pillow in our lap while feeding her.  She was very hard to comfort.  This was the hardest thing for me to do.  All I ever wanted to do was to hold her and cuddle with her but she had her limits.  She is still this way.  She rarely gave hugs and still rarely does.  And she still doesn’t show much affection to anyone.  She still has a difficult time with it.  Along with this comes with lack of bonding with anyone even with parents, siblings, grandparents, caregivers, etc. Most babies and toddlers have a degree of anxiety when parents leave or at least notice when they leave or even when they return.  Our daughter wasn’t bothered at all and never took notice one way or the other at any age.  

Lack of emotion.  Our daughter doesn’t show any emotion really.  Never did.  You could never tell if she’s happy or sad.  Even at her age now.  She doesn’t express emotions.  After all these years we still can’t tell how she’s feeling unless she’s super angry or she’s overly excited.  There are no variations of emotions.  They may also have social problems.  They may not express themselves to other children making them less social.  Our daughter never wanted to play with other children unless they were 4 or 5 years older than her or just wanted to be around other adults.  I think this is because she couldn’t communicate or didn’t know how to communicate with her peers.  Now that she’s older she can.  She eventually was able to learn how to although she still lacks in social skills.

Attachment to objects.  Our daughter always had something that she constantly had to have with her or had to be in the same exact place she always leaves it.  It’s like an obsession.  After a while, she would move on to a different object.  Sometimes if a child is doing this, they will make sure they take care of this object like it’s a living thing.  She would also have these collections of certain items and became obsessed with hording them in other words.  They could be rocks or little pieces of paper.  It didn’t matter.  And she would just keep these things and do nothing with them but keep them in a special spot. 

Communication struggles.  Like our daughter, children may not be able to start a conversation themselves.  She never could when she was younger but she doesn’t have a problem starting one now.  However, her conversation usually only lasts for as long as conversing 2 sentences and then it’s cut short.  Normally we have to keep the conversation going.  She also doesn’t speak with an audible pitch.  Most of the time it’s monotone and kind of mumbly.

Fixations.  Sometimes they fixate on certain subjects and it becomes their obsession to learn as much information about that one subject.  There was one time our daughter was so fixated on storms and she just had to have every bit of information she could get.  Even when she was as young as 3 or 4.  It would last for months and months before she would move on to something else.

Self injury.  Sometimes they will hurt themselves by banging their head, poking their eye, picking or pinching their skin, hit themselves, etc.  Our daughter has always done this to herself and it’s scarier now because she’s much older and stronger.  It doesn’t happen as often as it used to when she was younger.  She has never shown aggression to others, only to herself.

Struggle with daily activity.  The things you typically do every day.  Hygiene is a big one for our daughter.  We have to constantly make sure she brushes her hair, uses deodorant, that kind of thing.  However, she doesn’t have a problem taking a shower or brushing her teeth.  She’s actually proud that her dentist told her she had perfect teeth.

Regression.  If your child has consistently met important milestones and then all the sudden started regressing them, that’s another sign that may need to be addressed.

There could be more signs out there if you do some research.  And remember, don’t panic if your child is showing a few of these signs.  If they are only showing a few, it may not mean anything at all.  If they start showing more, then you should keep making your observations.  If you think your child may need evaluated, don’t hesitate to talk to your child’s doctor.  The earlier your child can receive intervention the better.

Keep an eye out for my next posts for the rest of our daughter’s story.

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