Autism Spectrums

[KadysMom]

Can someone help me understand some of the spectrums under ASD? My nephews were diagnosed autistic. Their mother was mad because she was HOPING for PDD-NOS. She said that she had heard it was the easier one to deal with. Can someone give me some insight on the spectrums?

 

[LMC]

My DS is PDD-NOS and trust me, our life is not easy. He has several disabilities and a host of learning disabilities. Some are tied into the PDD-NOS, some are not but put them all together and life is very difficult. He works at things so hard and it makes me sad to see that no matter what his effort, he is still not like other kids. DS is 15yo now. He has no real friends. No one ever calls him, no one ever invites him anywhere (except his 16yo cousin that lives 1/2 a mile away from us). No one every texts him or emails him. He initiates alot but no one responds. He will tell you he has friends because he knows people's names. But to me friends are people who talk with you and at times do things with you. If it were me I would have been hoping for NO diagnosis!! The best thing their mother can do is get some therapy services started for whatever issues the doctors told her need to be worked on. Socialization will be important and not just between the two boys.

 

[KadysMom]

Thanks for your response. They are going to be 3 in January and they get NO socialization. They are literally in the house all day long. They do see a physical therapist now and they have an occupational therapist that comes to the house each day for 2 hours. Both of these services started within the last 2 months.
They dont speak, make eye contact, or anything else. They only watch TV. Breakfast, Lunch and Dinner are all in front of the tv, and then they go to their room to watch tv....
And thanks for the stories on your son

 

[LMC]

My first suggestion would be turn off the TV. This would make them become more engaged with each other and their mother. I would suggest a mothers day out or 1/2 day preschool if the family can swing it. I just don't think that it just being the two of them is "socializing". Also, they both display the same non-social tendencies so they are not learning age appropriate behaviors.
I am sure with twins it is very hard to get them out I know how hard it was with just having my one special needs going to therapies and all (I had two others by the time he was five) but it is possible to do it. Does the mother have any family support? By support I mean real support like people willing to step up and help and not just lend an ear. I had alot of support in people who listen but in those early years having someone step up and actually help do things with us and for us helped tremendously. Mentally your are drained, keeping up with doctors, therapies,etc is stressful and tiring, and now she needs to start training and teaching her kids to live a "normal" life.
Of course if the mom is not open to it, you have to find a way to "convince" her to accept help.

 

[bookwormde]

Diagnostic labels are just that, a label and depending on the competency of the clinicians they can vary for an individual. I have found that PDD-nos is often given by clinicians who do not have the high level of competency it takes to accurately evaluate a child. In the end with a few exceptions it is all about having parts of the Autism genetic set.
The 3 core characteristics are almost always what needs to be understood and supported first. Sensory differentials need to be cataloged and adapted for and worked on to the extent that it does not create damaging anxiety. Social skills are generally the next area which require, first an acceptance that the child does not have innate societal social skills innately and that they need to be taught intellectually and generalized like any other curriculum so that the child can have a complete a set of intellectual compensatory skills as possible. If the family or social environment do not understand this limitation, and expect neurotypical abilities and reactions, again it can generate exceptionally damaging anxiety, to the point where gross clinical co morbidities like OCD, ODD, Bi-polar, anxiety disorder and so forth occur. Executive function is the 3rd characteristic. For most spectrum kids it is most obvious in difficulty with linear processing, which is the structure that is used in schools to teach neurotypical students. spectrum children's system is non linear (image based).
Anxiety and its manifestations are always the best gauge of how well a spectrum child is adapting the gross discrimination that exist in living in a "world" designed for a completely different genetic evolutionally imperatives and abilities.
It is often missed that these genetics come along with some amazing gifts, once you understand and get the anxiety production issues manages and provide appropriate supports.
They need to be learning the compensatory skills that I described above, within the limit of not generating damaging anxiety. I would suggest for mom and the extended family to become familiar with the floor time model and begin to implement it.
Here is a link
http://www.icdl.com/dirFloortime/overview/index.shtml
Sitting in front of the TV is not necessarily a bad thing as long as the content had both strong intellectual and appropriate social modeling content since it is one of the most effective ways to manage anxiety and is the child's natural mode of receiving information. It cannot be a substitute for as intensive a program for working on the 3 primary characteristics and teaching skills and adaptations for them.
Bookwormde

 

[jlcw14]

Do they offer any kind of early intervention preschool in your sister's area? My kids both attended a wonderful preschool and it really helped their social skills. At the time we lived away from family so the opportunities for socialization were few at home.
Both of my children were diagnosed pdd-nos. They are as different on the spectrum as they are in their personalities. My son is non-verbal; my daughter will talk your ear off, even if her pronouns are incorrect! My son has more sensory issues; my daughter has had more behavioral challenges. I once asked a psychologist whom I used to work with what the difference is. I may get flamed for this, but he said that its a bs diagnosis that psychologists give so they don't have to level with the parents and say "its autism". Now, I should add that I think this psychologist is an aspie, lol

Good luck to your nephews. I have to say I used floortime and loved it. Another socialization help was my big, huggy family - they were in my kids' faces so much, they had no choice but to make eye contact! Lol

 

[ratlenhum]

I didn't read the other replies but PDD-NOS is autism. It's on the spectrum, it falls under the umbrella and it doesn't matter what you call it, it's difficult to deal with. Does she think her kids will be easier to deal with if their label is different. Where I live "autism" will get you better services than "PDD-NOS."

My son's official diagnosis at 2 years old was PDD-NOS but when he hit school age his IEPs all state "AUTISM."

I think we all go through some level of denial, think one thing is easier than another, and don't want the stigma that is associated with a label. I know kids with Aspergers who have just as many difficulties as full blown low functioning autistic kids, they're just in different areas.

My advice, forget the label they are given and get on with the therapies and help. Turn off the TV, make them play and interact. I never had a 2nd child because I wanted to wait a year or two to see how my son did, and now I see how much better kids with siblings do. It's a built in therapist!

 

[brettgirl]

My 10 year old son (who was a premie) started at developmentally delayed, then sensory integration was added followed by PDD-NOS. At about 5 he was diagnosed with high functioning autism and now is classified as having aspergers. He's been in therapies since he was 15 months old, because of this he is managing with a recently acquired IEP, TSS support services for 15 school hours and is in a typical 4th grade class.

PLEASE, get the mom to get services for your nephews!!!!! It does not matter what it is called, they need help and support.

 

[sl_underwood]

My son has a dx of pdd-nos and it is an autism spectrum dx. It is not easy, and it is not fun. I second the advice to turn off the tv and engage in activities with the kids. I find that my son thrives on a routine. We have a wake up routine, school routine, bedtime routine. For us, specific activities signal to him that we are preparing for a change. For example, at bedtime, we start by cleaning up all of his toys, he gets his bath and massage, we eat a snack, discuss the next days plans (especially if there are going to be changes from our regular schedule) brush teeth, read a book, then go to bed. Each activity signals that it is closer to bedtime. The same is said for other routines. In the morning, we also discuss the schedule for the day. While we eat breakfast we talk about what our plans are. That way our son knows to expect changes. I also agree with providing socialization opportunities. Our son is homeschooled but socializes daily, even though its his least favorite part of our schedule. He goes to a kids club at our local YMCA Monday- Thursday afternoon for 2 hours. He also has therapy in the mornings Monday-Thursday where 30 minutes is nothing but group speech for social skills. Tuesday and Friday he attends homeschool PE and on Fridays he takes an Art class at our local science center. When he was younger, we attended the preschool reading group at our local library. Our science center also hosted a preschool group, MOPS was another good group for him to use for socialization. It is important that she provide opportunities for her children to socialize and watch others socialize. I would also suggest that she find support for herself. Having friends who get it can be very helpful. There are days when it is so hard being a parent of a child with special needs and having someone who understands can really make a difference.

 

[Nik's Mom]

I have 2 autistic children and there is nothing similar with their disability. They are both so different! Your nephews need to get out of the house and mingle with people. Special Olympics has done wonders with both of my boys! Also, check with the speach therapist to see if she knows of any social groups. My oldest ds participated in a social group last summer that was held by his speach and occupational therapists. he learned so much from that group!

I agree about keeping them on a routine. Every kid on the spectrum that I have known seems to do better on a schedule. It really helps to prevent meltdowns! Also, if your nephews are in school, it would be helpful for their mother to connect with another parent in the class. It really does help to meet other parents who are going through the same thing. That is why we have a support thread on this board. Believe me, it helps to feel that you aren't alone.

Now, I realize that not everyone can do this, but I really encourage their mother to get those boys out and travel with them. We travel quite a bit with our boys. We've had several teachers tell us that they always see an improvement in our boys after each trip. You know the saying "travel broadens the mind"? Well, that is definitely true with kids on the spectrum. We take everything as a learning opportunity for them. From learning how to wait in a line, learning how to soothe themselves when they get stressed, all the way to learning about history or any other topic. It's amazing what they learn when we take them on trips!