Topic : 12/19 Parents’ Ultimate Test: Dealing with Autism

Hi there:  I live in Winnipeg, Canada and we have two grandsons with Autism.  One of the grandsons also has a seizure disorder.

What upsets me the most after watching the show twice now (I've taped it) is that continually throughout the show Dr. Phil referred to the children as "Autistic Children".  The lawyer who was on the show referred to them as "children with autism".  I work in the field of children with disabilities as well as having adopted four boys with disabilities, and a long time ago I learned that our children deserve the same respect as all other children, particularly according to the Rights of the Child in the UN Convention.  We should NOT identify our children or family members by their "label" or disability.  They are gifted human beings as we all are, and they deserve to be identified as themselves first and disability second if that's required or necessary.  We have walked the paths with our respective daughters in terms of having their children diagnosed, and it has been difficult, no doubt.  But, we never lost sight of the fact that they were children first and foremost.  Autism is just something they happen to have, and therefore it is up to us as a family to research and provide whatever interventions (and I believe whole heartedly in early identification and intervention), supports, and resources that our children need.  I have also taped the show for a national task force I am involved with in terms of working out with governments, policies in providing supports  and resources for individuals with Autism Spectrum Disorder from birth to death.

Val Surbey

Winnipeg, Manitoba, Canada.

I am a mother of a 16 yr old with high functioning autism.  I thought he would be excited to get his driver's permit and went to sign him up for driver's ed.  He decided he didn't want to drive.  I was surprised - but I could see where it could be overwhelming.  Driving a car for the first time is daunting for "neuro typical" teenagers.  It is okay if he doesn't want to drive a car - he is quite capable of using public transportation. 

Our biggest challenge we will face in the near future is college and career choices.  I agree with you that adults need services too.  Early intervention does help but when these kids grow up they still need their resources and safety nets.

I am also a special ed teacher.  I teach a class of students (all boys) kindergarten - second grade/ all on the spectrum.  I love my class, "my boys", second only to my own.  I know my guys like I know my own children. I am sorry to hear that you suffered at the hands of an educator.  I am also a little concerned that the portrayal of one "bad" educator will cause parents to scrutinize and perhaps falsely accuse "good" teachers.  I agree that parents should meet with their teachers, should ask What is your experience, qualifications, and philosophies?  What methods will you be using in the classroom?  What is the classroom discipline policy and how do you handle noncompliance?  I can remember when I was a teacher's assistant in a kindergarten room during open house a mom asked "What is your discipline policy in the room?" Then she asked "What if he CAN"T follow the rules - what if is not able to?" This mom knew her son was going to struggle.  She already suspected he was different and was not going to be able to do all that his peers could do.  I can only imagine her thoughts "He will spend all day in time out." He was later diagnosed with autism.

Debbie,

I am the mother of a 16 yr old with high functioning autism.  My son is verbal when he chooses to be.  However, when he was young I first started having concerns about him around 15 months old.  He is extremely intelligent and is doing well in school - he always has.  He is not overly social but he seems to be happy.  I knew something was wrong.  My son did not display some of the classic behaviors and was doing well enough in school that I was told I was making something out of nothing.  I was told he is in the top ten percent of his class he will never qualify for services.  But something was "wrong" - it wasn't just me.  Finally in second grade his teacher asked "has anyone ever approached you about having your son tested?  I suspect he may have some underlying issues."

Looking back now the most difficult time I had with him was 18 mos to five years.  He was very easily frustrated with tasks he could not figure out. During this time we could both be in tears at the breakfast table because something wasn't just right.  He displayed signs of OCD and perfectionist - we really had to work on what was "good enough".  The world is an imperfect place and I knew if we did not get a handle on this we would all be nuts.  He had trouble abandoning something that was not complete.  This continues be a problem with some school projects today. 

Another aspect that I haven't read or seen mentioned here is Sensory Processing Disorder.  Many times children or persons with autism have sensitivities to a variety of stimuli that will send them into meltdowns.  Their nervous systems can't make sense or decode the input and it can cause a myriad of behaviors.  Some become self injurious because their nervous system needs that jolt to reset itself.  Foods can be BIG sensory issue - they have a very limited palette.  Some prefer certain textures, some flavors, some have aversions to to textures and flavors.

We have worked the gamut with my son.  He is really very funny and a joy to be with.  Unfortunately he doesn't feel comfortable to show that side to many people outside his immediate family.  There are a select few that see the real boy in there.  He is in honors classes in high school.  He plays several instruments: drums, piano, flute, trumpet, right now his passion is guitar.  He played soccer for almost ten years but has given it up for Lacrosse.

If the tubes don't help or you continue to see behaviors that you question - try to see a developmental pediatrician.  Ask about a CARS - Childhood Autism Rating Scale, usually administered by a child psych., but it is a rating scale that parents fill out about behaviors you are noticing.

Best to you and your family.

I agree. It seems to be just the latest issue parents can martyr themselves over. Talk about how they suffer so much having a child with Autism, while they let their child suffer. Or worse, force dangerous "cures" on them like Chelation therapy, which has been known to severly malnutrition people. All in hopes to get rid of supposed bad metals, that might not even be there in the first place.

Alot of people I talk to on the Asperger's Syndrome bulliten boards, I have Asperger's Syndrome. They say people like to only see Autistic/ Aspie children, they don't want to hear about them as adults. It's like once someone who's Autistic or who has Asperger's Syndrome become an adult, they don't exsist anymore. There is no support for them.

In order for there to be shows about Autistic children being ok, there needs to be a change in our society. From parents who cry out, "YOU'RE NOT A PARENT, SO YOU DON'T KNOW ANYTHING!" To parents who say, "You don't know how HARRRRDDDD it is, how much I SUFFER!" They don't say this out loud, but they certainly speak in a way that states these feelings.

We need to start being a society that hold parents up as being responsible as parents. We need to stop feeding what these martyr parents what to hear to them. They have to realize what is important is their child. It's too much for them? Perhaps they shouldn't have been parents then. Don't want to have to hear that? Too bad. While you're going off whinging about how you can't have your little social life anymore, or how you have to spend 24/7 taking care of an Autistic child instead of doing what YOU want to do. Your child is suffering.

The answer isn't to cure them so they can be more self-sufficent, so you can continue with your fantasy of being a parent and having time to do things for yourself, you need to be a better parent. That is the answer. There should be no more of these pity party for parents who didn't realize what they were getting themselves into. Nobody seems to take having a child seriously anymore. It seems when people have children who are "imperfect", they just see it as an excuse to whine about it to anyone within ear-shot instead of doing something about it.

Like the woman on the show, her son did say horrific things to her. However, it's very immature to go on a show and cry over something her child said, when he might not even be able to control saying it. How about talking about helping your child, going to a psychatrist? Doing something. I'm sorry, taking things personally like that from a child who clearly is sick and doesn't realize they're being harmful, is like a over-sensitive child who takes everything personally. The world doesn't revolve around her, she needs to get help for her son. Not go on Dr. Phil and cry cause she didn't realize she'd have to put in extra effort when she had children. Nothing will be accomplished until she realizes her son needs help, and that her wasting time feeling sorry for HERSELF, only is a hinderance to his healing.

You know, maybe I'm nuts. I think it's ok to say you know what, maybe I wouldn't be fit to be a parent. Ok, maybe handling children would be overwhelming for me. Fine, it isn't imperative that you grow up and have children. Perhaps if more people had this view, there would be less children suffering a life in a house where the focus isn't on them, because their parents didn't consider the responsibility of having them.

Maybe there would be more Autistic children, being able to be born to parents who would truely love them and take their time to help them, rather than sit and stew in their own greif over not having the perfect child whom they could leave to take care of themselves at home, while they went off having a life of their own. It seems people really don't understand the concept of, your children are your life, these days.

I know I will be flamed for this message, I'm certain I'll get a bunch of  "You're not a parent, you don't knoooooowwwwww" responses. I know what becomes of children who are born to parents, who think raising them is a part-time job. This might not even be an issue, if we lived in a society that said if you're a parent your life should be dedicated to your children. Instead of treating all parents, like high schoolers with little to no sense of responsibility. People who can't tell wether they want to hold a job, or have their social life and go to the prom with their friends. When you have a child, you have to be prepared for anything. Shows like this one about Autism, just feed into the pity party, for parents who were surprised and disheartened, they weren't born a perfect child.

It's not about the parents, it's about the children. Parents, really you need to get over yourselves and focus on helping these Autistic children. Helping them, not trying to cure them, not trying to make them what YOU want from them. Accept them as THEY ARE, and work with them. Maybe you will have to spend the rest of your life taking care of them, maybe that's the hand you've been delt. If you are a real parent, you'd be thankful for the gift to be able to care for someone, who will have unconditional love for you. Instead of mourning the life you could've had if you didn't have children.

I am a single mom of two children both with special needs...my daughter was first diagnosed with mental retardation at the age of 6 months. I was told she would never talk, walk, run, or be like any other other children. Then I was told she wouldn't live past the age of one. I then took her too anther doctor for a second opinion who then told me she autistic. I had no idea of what autism was. I was so devastated. The doctors linked me with an organization in my home town called The Resource Center who sent in a lot of different specialists to work with my daughter. She said her first word at the age of 4, she took her first steps at the age of 4 and she first started looking at people at the age of 6. She still receives OT, PT and Speech in school. I have her in special classes where she is in classes with other children just like her, but she does so well. She is very Tactile Defensive, and still at this time she does not like to go to stores during busy times.

Last year we tried her in Baseball and she did very well. Every year I push her to do a little more. Even though she is autistic, I don't treat her like she is.

She has a lot of behaviors though. She does a lot of self injurious stuff to herself. She will bite herself until she bleeds, or she will pull her hair out until their is a bald spot, or pinch herself until she rips her skin. It is so heart breaking to see a child that you love so much that you brought into this world hurting herself so much and there is nothing you can do about it.

My heart go's out to all the parents out their that are going through this. My only advise to you is to find resources in your community for help.