Asperger's? What would you do?

[asmall]

My 10 year old nephew was recently diagnosed with Asperger's. I have been babysitting him up to three times a week since he was a few months old, and I just don't see this in him. He is great with social skills, we can go to playgrounds, swimming, anywhere where there are lots of kids and he gets along with all the kids great. One time at the playground there was a fight/problem because the younger kids were getting left out and he rallied the kids together and made a speech about how all kids should play no matter there age. He has lots of interests, he collects baseball cards, plays sports, plays with his cousins, is part of a club. He is very easy going, he can go from one activity to another without any problem. He does well in school, but I wouldn't say he is gifted or anything. From everything I see I just don't know how he has gotten labeled with this. I really want to say something to his parents, but I don't want our relationship to change. I am worried his parents will take it the wrong way. My kids love their cousin and they look forward to his coming over. I don't want to mess this up. What would you do? Would you say something? It is so hard because every fiber of me is saying this is not correct.

Thanks,

AL

[Mandy in TN]

Why did the parents seek a label? This would definitely make a difference in how or if I said anything.

Mandy

[Kathryn]

No, I would not tell his parents that I don't agree with the diagnosis. If you really, really feel the need to say something, I'd approach it by asking what the diagnosis process was like. Also, you could wonder about the fact that Asperger's no longer exists since the new DSM, so how does that work.

[Rebecca VA]

I might say something, "If nephew has Asperger's, he's certainly the HIGHEST-FUNCTIONING child I've ever seen!  His social skills are wonderful!  You're doing an amazing job with him!"

[Mom2TheTeam]

I don't know what kind of relationship you have with the parents.  I'd just start a relaxed conversation about it and say something like, "Wow, I had no idea. He seems to hide (or deal with) it well.  I would have never known.  What clued you in to needing a evaluation?"  I wouldn't make it a big thing at all, but just start a normal conversation with family about a recent diagnosis.  I'd say the above to almost any family member and it would be perfectly acceptable.  Maybe your family is different.

 

Hugs to you since I'm sure this is upsetting.

[SwallowTail]

It is still okay to dx Asperger's, bc /the DSM-V is not being officially implemented until next year.  A reputable practitioner will not give such a dx without making sure that the very specific criteria are met.  They rely mostly upon parental observations though.  MOst parents would nto spend the time or money pursuing such a dx unless the problems were fairly disruptive to their and their child's lives.

 

It's quite likely that you don't see the things that he deals with because you have him in different contexts.  My experience is that most people do not have a good idea of what autism or Asperger's encompasses and have bought into stereotypes which may or may not present in the manner they expect.  So, he gets along well with younger kids?  This is very typical of kids w/ Asperger's and PDD/NOS.  However, they often struggle with same-age peer relationships. He may have sensory issues or anxiety issues that they deal with in him.  Her may be overly rigid or have singular focus on certain topics. 

 

Outsiders, even family, often have no idea the various struggles and challenges that are present in these people.

 

For instance, my mom didn't recognize my child's communication ssues, because she "has such a gerat vocabulary."  Well, that is true, but her communication is often halting, monotone, and more of a monologue - non-reciprocal.  And my MIL thinks my child is completely "normal."

 

Prior to speaking to the parents, unless you want the conversation to be purely your asking them to tell you al about their experiences,  it might be a great idea to do a lot of reading on the topic of autism and Asperger's.  You might see things in a different light.

[I.Dup.]

I would not say anything. I believe I have asperger's, as well as my dad and my son. It is very hard to pinpoint exactly what is wrong, even though our daily functioning is very much impaired. It has been a nightmare trying to figure out what was "off" with my son, although I have discovered a lot about myself in the process.

[asmall]

His parents have gone through a break-up and getting back together three times. (Now they have been back together for two years.) He started going to counseling because after these issues he started getting very angry with his parents. They said the temper issue was because he has Asperger's, but to me it seems this comes from the rocky relationship his parents have. (They are working on it.) They have also told me that he gets wrapped up in video games and has a hard time shutting them off, but to me that is the case with lots of normal kids. I just don't see this. I guess I could not be seeing the whole picture with me not being his mom and all, but he really is a great kid, and I don't want him to feel bad about himself. And it is true I don't know that much about Asperger's, but everything I have read about it, is so not him.

[GoVanGogh]

It is still okay to dx Asperger's, bc /the DSM-V is not being officially implemented until next year.  A reputable practitioner will not give such a dx without making sure that the very specific criteria are met.  They rely mostly upon parental observations though.  MOst parents would nto spend the time or money pursuing such a dx unless the problems were fairly disruptive to their and their child's lives.

 

It's quite likely that you don't see the things that he deals with because you have him in different contexts.  My experience is that most people do not have a good idea of what autism or Asperger's encompasses and have bought into stereotypes which may or may not present in the manner they expect.  So, he gets along well with younger kids?  This is very typical of kids w/ Asperger's and PDD/NOS.  However, they often struggle with same-age peer relationships. He may have sensory issues or anxiety issues that they deal with in him.  Her may be overly rigid or have singular focus on certain topics. 

 

Outsiders, even family, often have no idea the various struggles and challenges that are present in these people.

 

For instance, my mom didn't recognize my child's communication ssues, because she "has such a gerat vocabulary."  Well, that is true, but her communication is often halting, monotone, and more of a monologue - non-reciprocal.  And my MIL thinks my child is completely "normal."

 

Prior to speaking to the parents, unless you want the conversation to be purely your asking them to tell you al about their experiences,  it might be a great idea to do a lot of reading on the topic of autism and Asperger's.  You might see things in a different light.

 

:iagree: especially with the bolded portions.

My child has a neuromuscular/physical disability. Most people don't have a clue about our daily struggles. They tend to look at the good - "But he does so well with xyz," but they totally overlook all the struggles.

 

His parents have gone through a break-up and getting back together three times. (Now they have been back together for two years.) He started going to counseling because after these issues he started getting very angry with his parents. They said the temper issue was because he has Asperger's, but to me it seems this comes from the rocky relationship his parents have. (They are working on it.) They have also told me that he gets wrapped up in video games and has a hard time shutting them off, but to me that is the case with lots of normal kids. I just don't see this. I guess I could not be seeing the whole picture with me not being his mom and all, but he really is a great kid, and I don't want him to feel bad about himself. And it is true I don't know that much about Asperger's, but everything I have read about it, is so not him.

Well - having asperger's doesn't make him not a great kid, you know? Nor will it make him feel bad about himself. That is an adult projecting your opinion of asperger's off on the child. I have read/heard that many children are relieved to get a diagnosis, as it finally explains why they are different - because they already figured out they were different, but didn't know how/why.

As I mentioned above, my child has a neuromuscular/physical disability. One of the most hurtful things people have said since getting the diagnosis is that they don't see it (the diagnosis) in him. Honestly. It makes me furious whenever people say that to me. Like we totally made this up? Like we spent thousands of dollars on testing, evaluations and therapy because we felt like it? Like I have laid in bed crying for hours over the diagnosis for no good reason?

It is a battle to get a diagonsis, getting sent to the correct specialists, researching the ins and outs of the diagnosis, deciding whether or not to label your own child. It really isn't the place for an outsider, no matter how close, to question whether or not it is correct.

[sbgrace]

 I don't know why a professional would ever dx. a child with a spectrum disorder if said child didn't meet the criteria. If it's wrong, it will shake out somehow but it's very unlikely to be wrong anyway.

 

I have a spectrum child. I have not liked it when people question the dx. I wouldn't say a word.

[MomatHWTK]

It sounds a little like you are trying to make your own diagnosis.  It may be that the professional is incorrect, but it is definitely not your place to say. 

 

Really, why does it matter?  The only reason the child would feel bad about himself is if you decide that a label suddenly changes who he is.  If he is the same child then it shouldn't matter whether someone says he has Asperger's or Pink spots with Stripes disease.  Treat him as you always have. 

 

I agree with the others, there is nothing more annoying than someone looking in from the outside telling me that I don't understand my own child and what his needs are.  Even worse is when the person wants to point to something I've done that must be the cause.  3 days a week is not the same as 24/7. 

[kiwik]

It should only matter if the parents use it as an excuse to not deal with things eg. He has temper issues because of his aspergers there is nothing that can be done, rather than his aspergers means he needs extra help and practice to deal with his temper but he will get there.

 

Add me to the list of people who may be diagnosed with aspergers if I were 30 years younger.

[dmmm]

All the Aspies I know are social. My dd even had a sleepover this weekend for her bday with NT kids. My family and many of her friends parents doesn't see it, but then again they didn't have to go to school every other day for conferences. And yeah, my dd got good grades.

 

I can understand your wanting to know why your nephew has been given this label, and as someone who is so active in his life, I am surprised his parents haven't told you. I would ask, but I wouldn't question. I agree with the PP post about commenting how his the most high functioning kid ever.

 

Just have some tact and empathy. You aren't the expert so don't pretend you know more than the parents and the professionals.

[kbutton]

I think your concerns are sweet and caring, but as other posters have pointed out, it could be tricky to ask questions, etc. without offending. My son was recently diagnosed, and some people will probably not be able to agree with it when they find out. I dread telling my MIL (who most likely has a undiagnosed disorder of her own). We live with it, so we feel differently. Our psych was very affirming, and she pointed out ways in which we have "remediated" a lot of his difficulties even before we knew what they were or knew that we were doing it. We were just responding to him the best we could. Perhaps you have a bond and an insight into your nephew that brings out his strengths. If so, it could be difficult for you to see his struggles. My son has certain people who bring out his gifts and others that bring out every quirk. Regarding home instability, it's entirely possible that caring for a child with undiagnosed Asperger's without the support a diagnosis can open up has put a strain on their relationship (not necessarily the only strain). I have had times where I exhibited PTSD symptoms, and trying to summon energy to work with my son can strain my marriage at times. Obviously that is not the only reason for those symptoms, but it was a big part. People have NEVER believed me about how my son thinks, behaves, etc., and that lack of support came out in their actions and attitude (and that was before we even suspected a developmental problem).

[asmall]

Thanks for all the replies. I have to stay quite for now. I really want things to stay the same with me being able to watch him so often. I just want the best for him.

[Mom2OandE]

I might say something, "If nephew has Asperger's, he's certainly the HIGHEST-FUNCTIONING child I've ever seen! His social skills are wonderful! You're doing an amazing job with him!"

I wouldn't say this. As a mom of a high functioning child with Autism I've had people say this. I see through it and it comes off as passive agression. If you truly are concerned then there is a sincere, genuine way to inquire and that's by being honest and open in a loving way.

[...................]

I have a child with mild Asperger's and most people thought I was nuts when I first started mentioning it here and there.  But they weren't there when we spent 5 years of his life dealing with extreme sensory integration disorder.  They weren't in the house when he acted out a certain commercial he was obsessed with 1000 times a day (literally).  They weren't there when he spent an entire day perfectly perfectly and I mean perfectly coloring 3 entire transformer coloring books and then cutting each one out perfectly at age four.  They weren't there every time he threw up because he had been overstimulated by all of the activity. They weren't there when he almost drowned his sister twice because he was pretending that she was under something and held her under.  THey weren't there the day he tried to fly off of his bunk bed while in a fit of rage over not being able to wear JEANS in the middle of a south Florida summer becuase he was in his Woody from Toy Story phase.  They weren't there during all of the hundreds of thousands of stickers he earned for not walking on the tops of his toes, or shaking his hands while jumping....

 

All they saw was the limited two hours of exposure during his best times of day (which I intentionally scheduled during those times since i knew he had issues.)  All they saw was a highly highly intelligent, highly verbal, funny, interesting, and usually kind boy.  

 

As he got older things got better and better.  We pushed through. We made charts.  We changed diets.  We used supplements.  We didn't give up.  Then when he was older and he was functioning much better- almost normal- and we mentioned it we had family members tell us we were nuts.  It felt like a slap in the face because we had worked and worked and worked and worked and worked and worked and sometimes cried and often suffered - and rather than acknowledging God's amazing work in our son, they told us there had been nothing at all to begin with.  

 

Now, your situation is not exactly like what I am describing because it sounds like you spend a lot of time with your nephew- My sister who spent more time definitely understood the diagnosis better than my mother.....BUT I am just saying that unless you are around some kids A LOT you may not see or notice their issues- especially if it is mild or if they have worked on things themselves really well.

 

I will say this- if it were me- the only reason I would raise an objection or concern is if they are planning to medicate.  Because the medication for these issues is extremely dangerous, usually increases greatly over time, and has serious long term side effects.  Asperger's is best managed with diet, schedules, and behavioral therapy and a lot of patience.

[...................]

AND BTW FWIW, it can be VERY VERY stressful for parents who have children with this issue to not have understanding, support, help, or even books to read. It is highly important for all parents to feel like they have the knowledge to proceed. It's like if your child had the flu for the first time and you had no books, no internet, no friends, no parents or in laws to tell you how to manage, and you never had the flu and never knew someone in your life who had the flu.  How would you feel?  You would feel extremely inadequate, frightened and even desperate.  

 

That's what it's like having a Special Needs child with no diagnosis.

[PeterPan]

... he really is a great kid, and I don't want him to feel bad about himself. And it is true I don't know that much about Asperger's, but everything I have read about it, is so not him.

 

Just wanted to comment about this.  It's common for people who haven't done evals to think that doing evals on kids makes them feel bad.  I suppose it would in social situations if people use it to tease or something, and admittedly there are such merciless and unkind human beings.  Just in general though, if the dc HAS differences, generally the dc feels BETTER for finally having words for it.  It's usually the opposite of what people expect.  Usually by a certain point the dc notices he's different, is asking why, and feels RELIEVED someone finally gets it and can put words to it.  

 

While I do understand your questioning given the overall odd situation, I'll also toss out to you that almost anyone who is very, very attached to a child takes a long while, much longer than they care to admit, to see the problems and not see the situation through their love and well wishes.  (Kind of like when your baby was the MOST BEAUTIFUL BABY EVER, and then you look back and realize DANG he was ugly.   :lol: )  Most moms take a LONG while to admit certain symptoms weren't normal, weren't in the realm of typical.  You can even have a skewed sense of what is typical if some similar genes are floating around your own family.  So the very fact that you're so close to him may be skewing your objectivity.  

 

Most kids get eval'd multiple times (before college, etc. etc.), so it's not like this is a one time deal that won't get questioned or verified down the road.

[thebacabunch]

No no no no no on the "feeling bad about himself" thing.  WHat is there to feel bad about?  My dd8 knows full well she is autistic and she has the HIGHEST self esteem of anyone I have ever met.  It is a relief to know the in's and out's of high functioning autism (aspergers) as one who has it so that they know the good things and the challenges that go along with it.  It was a relief to her to know why she wasn't able to deal with sensory issues the way others do.  Honestly, I would not say anything and maybe do a little research.  Autism isn't a life sentence.  Don't look at it as such.

[Kathryn]

It is still okay to dx Asperger's, bc /the DSM-V is not being officially implemented until next year.  A reputable practitioner will not give such a dx without making sure that the very specific criteria are met.  They rely mostly upon parental observations though.  MOst parents would nto spend the time or money pursuing such a dx unless the problems were fairly disruptive to their and their child's lives.

  

 

When my son was diagnosed as qautistic almost three years ago, we were told that they were already steering away from AS diagnoses because of talk about it being eliminated in the next DSM. It seems very odd to me that someone would now diagnose it after the DSM has come out. What good will an obsolete diagnosis do in terms of services?

 

 

I wouldn't say this. As a mom of a high functioning child with Autism I've had people say this. I see through it and it comes off as passive agression. If you truly are concerned then there is a sincere, genuine way to inquire and that's by being honest and open in a loving way.

I was going to say the same thing. The absolute worst thing that you can say to a parent of a child with an invisible illness is in implying that you don't see it. Basically, what you're saying is that you think we are crazy and have gone through years of heartache and doctors and therapy for nothing.

 

As others have pointed out, unless you are the child's parent, with many high-functioning children, you might not notice. You might think my son is just good with young children, or that he's a spoiled brat, or well spoken and thoughtful. What you don't see is that he's not comfortable around kids his own age, he has horrible impulse control and sensory issues, and 95% of those deep thoughts and interesting conversations he starts are him repeating, word-for-word, conversations that he's heard.

 

Also, my son's diagnosis does not make him feel bad about himself. It gives him understanding for why he has a hard time with things others don't even have to think about. It gives us access to therapies, medications, help with medical expenses, etc. It lets others know that he's not just a bad kid; he is a wonderful child who has obstacles to overcome.

[SwallowTail]

  

 

When my son was diagnosed as qautistic almost three years ago, we were told that they were already steering away from AS diagnoses because of talk about it being eliminated in the next DSM. It seems very odd to me that someone would now diagnose it after the DSM has come out. What good will an obsolete diagnosis do in terms of services?

 

 

 

I

 

Our psychiatrist (who is part of a research university, so they try to be at the forefront) told us that people who receive the dx prior to the formal/official change over will not have the dx revoked.  Therefore, they will continue to receive whatever services  they were already receiving.  So, at least at that office/group/univeristy/hospital,they are still using the DSM IV.

[SwallowTail]

  

 

 

As others have pointed out, unless you are the child's parent, with many high-functioning children, you might not notice. You might think my son is just good with young children, or that he's a spoiled brat, or well spoken and thoughtful. What you don't see is that he's not comfortable around kids his own age, he has horrible impulse control and sensory issues, and 95% of those deep thoughts and interesting conversations he starts are him repeating, word-for-word, conversations that he's heard.

 

 

 

Exactly.  This  my daughter as well. 

[LucyStoner]

Many people didn't think that my son had autism because he didn't fit their image of what that looked like. They were all people who saw autism as something to be ashamed of. It's not. It's very helpful for my son to know why he has a harder or easier time with certain things. I would advise you to keep your opinions to yourself. Odds are that you are wrong and not seeing the whole situation.

[ktgrok]

Yup, there is no sterotypical Asperger's kid..not that you could tell right away. Lots of people have said they don't see it with my son. Trust me, it is there. Oh man, is it there.

 

It is very hurtful when they imply he doesn't have it, or they don't believe the diagnosis.

[dmmm]

 

 

I was going to say the same thing. The absolute worst thing that you can say to a parent of a child with an invisible illness is in implying that you don't see it. Basically, what you're saying is that you think we are crazy and have gone through years of heartache and doctors and therapy for nothing. 

 

I don't take it that way.  For me, it is nice to hear because I know my dd doesn't come off as NT around her peers in school.  When people don't see her AS traits, it gives me hope that she will be able to function okay later in life.

 

I can see why it is upsetting to others though.  I guess it depends on the source and the tone.  It was hard for people in her life to understand how she fit in the dx since so many people see autism as kids who can't talk, aren't social, and don't like to be touched.  She happens to be very social an loves physical touch so it was confusing.

[Oakblossoms]

When my son was in school they didn't think there was anything "wrong" with him. I was told many times that he didn't need any therapy besides minor speech therapy. His speech therapists told me point blank I was wrong that she had professionally worked with children for blah blah years.

 

But, when at home or getting ready for school it was horrid. Someone told me later that many spectrum kids are on their best behavior in public.

 

The second time we tried ps he would fall apart the minute he got home and be so tired.

 

I don't know what is up with your nephew. But, I would say you are awesome sauce and are giving him a great and safe place for himself.

[Murmer]

High functioning children (Aspbergers) are high functioning.  That means that they are able to function....until that moment when they can't.  Be thankful you have not had to endure a melt down or a social interaction that is markedly difficult.  Judgement is hard and not needed from a family member. Since you are a caregiver I would take time to find out everything you can be ready to help this child more.

[Stayseeliz]

I agree that it's probably just not noticeable to people who have him in certain contexts. No one would ever think my 9yo has the issues she does unless they sat down with her and did school with her. It's insane.

[asmall]

I am feeling better with my decision to keep quiet. I went to the library yesterday and took out all the books they had on Asperger's. I am determined to do what is best for him.

Thanks Everyone,

AL

[Hunter]

I may or may not have some type of very high functioning autism. It's really hard to know what is going on with trauma victims. There is a triangle of autism symptoms, trauma, and Anorexia, that is worse than what came first, the chicken or the egg. Do trauma and malnutrition damage the brain. Are autistic people more likely to be abused and develop Anorexia. Is even the later Anorexia a result of past malnutrition from neglect and stress related digestive disorders?

 

But once someone is diagnosed with PTSD, Anorexia, or autism, the chance if being diagnosed with one or both of the other conditions increases. And too often diagnoses are based on money and access to services, and a whole host of nonsense, that has little to do with the person's actual symptoms.

 

Social workers and medical staff argue over my diagnosis all the time. I don't really care anymore, most of the time. Whatever. We all agree I'm different and sometimes cannot function without some assistance, especially when I'm seizing non stop, and frying brain cells.

[I.Dup.]

When I finally (after years) got into our Children's Village here in town to have my son evaluated, they spent about 5 minutes talking to him and the evaluator (an M.D.) said he "absolutely does not" have an autistic-spectrum illness because he could make eye contact and communicate perfectly fine. Has anyone else heard this?? So frustrating.

[MomatHWTK]

Sounds like the MD is doing a disservice for a great number of children. :-( 

[Murmer]

When I finally (after years) got into our Children's Village here in town to have my son evaluated, they spent about 5 minutes talking to him and the evaluator (an M.D.) said he "absolutely does not" have an autistic-spectrum illness because he could make eye contact and communicate perfectly fine. Has anyone else heard this?? So frustrating.

 

Yep they tried that with my daughter...thankfully eye contact is not the only indicator of a spectrum disorder.  The DSM has a variety of options including eye contact but not exclusively.  My dd had odd eye contact at 2+ but we worked really really hard on it and by the time she was 4.5 and they were attempting diagnosis it was "better" enough that they said it wasn't a problem.  Then 1 year later one of the Dr from the diagnosis team saw her again and gave the diagnosis based on non progression of social interaction and all the other issues that were previously talked about irregardless of eye contact.

[Orthodox6]

Why did the parents seek a label? This would definitely make a difference in how or if I said anything.

Mandy

 

A diagnosis is not "a label".  A diagnosis is a tremendously useful tool for parents, as well as for the child/teen.  Calling something "a label" is demeaning, in my viewpoint. 

 

 

No, I would not tell his parents that I don't agree with the diagnosis. If you really, really feel the need to say something, I'd approach it by asking what the diagnosis process was like. Also, you could wonder about the fact that Asperger's no longer exists since the new DSM, so how does that work.

 

I think that I agree with you, in general, about this possible approach.  Especially showing interest by enquiring about the diagnostic process used. 

 

(even though you already know that I consider the DSM-V a pile of crock, because Asperger's is quite real, and does not belong misfiled or obliterated amongst autism diagnoses.) 

[Hunter]

When I finally (after years) got into our Children's Village here in town to have my son evaluated, they spent about 5 minutes talking to him and the evaluator (an M.D.) said he "absolutely does not" have an autistic-spectrum illness because he could make eye contact and communicate perfectly fine. Has anyone else heard this?? So frustrating.

Dup, I'd have you in stitches if I listed the reasons I've been told I'm on the spectrum, and the reasons I've been told I'm not on the spectrum. And whoever is trying to convince me one way or the other says my refusal to believe THEIR opinion is just another symptom of my illnesses and a barrier to my recovery. Some of them even claim I'm morally defective because I don't hop on their bandwagon.

 

On Tuesday I was told I'm not on the spectrum, because I understood that it was socially odd not to own a sweater. But in the past others have said the fact that I don't own a "normal" wardrobe is proof I am on the spectrum. They even went so far as to set treatment goals for my dress, and team members would not only document my clothing choices, but call each other and report them! They got all excited about a shirt I was wearing that was not black, until they found out that I was just behind in laundry and wore a friend's shirt. :lol:

 

The human race NEEDS people on the spectrum. We play a critical role in society. We are also a bit more fragile that people not on the spectrum. Society as whole really is pretty inept at finding the most efficient and humane way to incorporate us into the mainstream, and to protect us and use us.