IS HFA a delayed form of Aspergers

Tony Atwood makes an arguement that HFA and Aspergers is really sort of the same condition but HFA is more delayed in their speech.  What do forum members think?  My son goes to a school where they keep the Aspergers separate from the HFA - and he says that his classmates don't interact well with the HFA's.  There is an HFa child in our building that we ocassionally make a playdate with - and though he likes Sam - Sam feels like we are forcing this kid on him. He does play with other kids from his school - and they twirl and stim sometimes next to each other- but there seems to be more communication.

Also, another mother with an HFA kid (we all wait for the school buses in the morning) seems to be almost hostile when I have invited her to autism get togethers (our school keeps us pretty well posted).  She keeps going on that she doesn't want to hang with Asperger parents because we have it so easy.  Secretly, I envy that she is on husband No. 2 and her kid goes to his daddy on the weekends.  Though I love my boy we haven't been by ourselves for a romantic weeken in 5 years - because no one wants to have Sam for an overnight.

Our parents with HFA oblivious to the fact that Asperger kids lose it too.  Instead of just moaning they scream at you and say horrible things to you. Sometimes, believe it or not, it would be easier to have a kid a little more obviously on the spectrum - it would be better than being accused by total strangers of having a spoiled brat and being a bad parent.   Pointing to the to two well behaved children just doesn't cut it.  I guess - it is hard on all of us - but I think it is unfair when one group thinks the other has it so much better.  When your kid has Asperger's they get diagnosed a whole lot later, and therefore, missed all that intervention that is supposed to be so crucial. I took Sam in for years - but because he did all the right things in front of the doctor - he wasn't diagnosed until he turned 9.  I missed 7 years of intervention that those with HFA got.  And supposedly three of our friends whose children were diagnosed with HFA were cured in their preschools and are now acting normally - so either their children never had it or those services really worked.  Children with Asperger's don't get the royal treatment when it supposedly counts enen though the parents are dragging them to the experts.

I really don't get too involved with Autism support groups - though we occasionally go to the outings - so I am not involved in all the politics.  Have other people witnessed hostility within the separate groups?  

Do most other people go through psychotherapy when they find out?  We spent alot of family time with his doctors learning how to deal with the stress of it - and basically - getting over the disappointment of not having the child we expected to have.  Are alot of parents angry  over having this to deal with it - or is it just mostly a stress/exhaustion thing.  We also noticed that there are alot of single parents with autistic children - do people feel that it strained their marriage to the breaking point or that one partner blamed the other?  I think there were times when our marriage was definitely stressed over it - but it was mostly due to the school situation.  We found that once we turned our anger on the school and how they were dealing with our child - our marriage improved greatly.  As my father the coach said, when the other team presses, best to press them back. I find when you advocate - the anger towards your own personal situation diminishes as you feel you finally have some power over what is going on.  anybody else feel that?

Just some random thoughts on the subject.

[Sally44]

Hi Sue,
I don't think there is a big difference between the diagnosis of autism and aspergers.  The only obvious one is usually aspergers don't have speech delay, but that doesn't mean they don't have problems with language/social communication.  I think all of the difficulties are experienced by both groups of children, but they manifest themselves slightly differently.  But there is such a vast difference from child to child with lots of other traits thrown in for good measure such as dyslexia, dyspraxia, Agnosia, tourettes, ADD, Depression, Executive Function problems etc etc.  
It can be very stressful having a child on the spectrum, but as you say, it is usually because no one is listening to you or supporting your child (especially in school).  I often find the institutions themselves are more autistic than my son!
As for free time.  Ha, Ha, Ha.  I'm still working on that one.  We go out together about once every three years.  We have the same problem.  Our parents are too old to handle both kids at the same time and we don't know any babysitter with experience of autism.  
I would recommend parent support groups though.  You get alot of information and support through them.  We have a really good one for children on the spectrum or with ADHD and their siblings and friends.  It is held once a fortnight in a community college gymnasium.  They put out all the climbing equipment, trampoline, bouncy castle etc for a two hour session.  All the children are happy to be in the company of other likeminded children.  It is great for siblings to meet other siblings in the same positon as themselves.  It is also great that friends can be invited to have fun and to meet other children on the spectrum.  Parents meet in another room to either chat, read, relax, vent some anger etc.  We don't do any fundraising or anything political as there are other meetings we can go to to do that.  We keep this as simply a social event.  For some parents with severly autistic children it is the only chance they have to get out of the house.
As far as marriage goes I think each person has to use their strengths and not expect their partner to do or approach autism in the same way as they do.  I tend to do all the reading/research/seminars/school visits/professional assessments/therapies etc.  My husband keeps us doing 'normal' family things and makes me take a break from my research!

[Sally44]

Just read your posting again.
Regarding how they are separated at school I think this is quite logical simply because the strengths of Aspergers individuals tends to be that they do have quite high levels of verbal communication and tend to be able to learn in the same way as other children do.
Autistic children tend to have problems with language both producing it and understanding it.  They also tend to have problems with numeracy and literacy so their work needs to be taught in a different way.  But I would agree with Tony Attwood that the basic problem areas are still the same, but the profile is different.  For example both Aspergers and Autism have problems with communication/social interaction.  But whereas an Aspergers child might have a topic of interest and talk to someone (whether they were interested or not) and therefore appear 'odd', an autistic child probably wouldn't have the level of communication (or the desire) to be able to hold a lengthy indepth conversation on any topic with anyone.
But out of the classroom I don't see any problem with integration (if that is what they want).  Some HFA may find an Aspergers child overbearing eg. the HFA may be stood there with their hands over their ears and the Aspergers child is unaware of that and is still telling them about their new hobby.  

[SueNYC]

Luckily Sam isn't so super obsessed verbally with his topics of interest - he'd rather do them by himself.  Also, I think if the Asperger's kids topics of interest are useful - say in math or science, that they can be turned into an excellent career.  My husband comes from an Aspie like family and so do I - both families produce bushels of engineers, rocket. scientists, applied mathematicians and computer geniuses (and I mean systems - both code monkeys).  All of these people re on a spectrum - and some of them have amazing abilities to focus.  Sam also seems to be able to hyperfocus when it comes to math equations and logic problems.  He does big divisions in is head and can do logic problems without a piece of paper.  He seems to understand how to intuitively get around  a computer and my husband is now teaching him web design for fun.  We re looking to turn his interests into something that can be parlayed into a career.

Wow - I guess we spent alot more time with doctors than everyone else did.  I love NYU cause they give you the scopp on whose books to be trusted and whose to toss in the garbage.  I should ask the Asperger expert what the scoop is on Atwood - though I know he is in the more respectable crowd.

Bad book - Out of Sync Child - they told us not to read that one.

[Sally44]

To be honest I don't know anything about Tony Atwood, but as you mentioned him I had a look at his website and I listened to a radio broadcast he had done in Australia about Aspergers.  I think he was pretty on the spot from a 'what you will observe' in the Aspergers person perspective.  But what I find missing from alot of professionals in autism is that they don't actually live with anyone on the spectrum, so they know some quite rigid diagnostic criteria stuff and can give you explanations of where behaviours are coming from from a clinical point of view but they cannot give you explanations of where those behaviours/skills/defecits are coming from from an autistic point of view.  It is almost like a half built bridge.  Then from the other side are the autistics themselves telling us how they experience things and what their learning styles are and their strengths and weaknesses and that builds the other half of the bridge.  Now between those two half pieces of a bridge is a bit of a gap and autistic people jump that bridge every waking moment of their life as they try to understand and be understood in the world we live in.  But I frequently find that it is NT people who seem to have a 'defecit in imagination' and find it very difficult to jump the gap and imagine what the experience is from an autistic perspective.
I think I read somewhere that you too have many sensory differences.  So do I.  That is why, for a long time, I couldn't see what it was that was autistic about my son as they were simply family traits/behaviours that we all have.  I am touch/light sensitive; I frequently appear deaf and zone out, I have auditory processing problems, oversensitive smell, poor balance etc.  So at least when my son tells me what he is experiencing I do have an understanding of what he means.  I'm glad your son's doing so well at school.  We also have alot of engineers in the family.  I think my son would make a brilliant engineer and his visual spatial skills are remarkable.  He also seems to 'know' how electronic equipment works.  But he has alot of information retrieval problems and may also have dyslexia.  I too am looking at skills/stengths/interests as a way into a future job.  But at the moment he is not doing well academically and it is so frustrating because it is not a reflection of his intelligence.

[Sally44]

I forgot to say, my son isn't Aspergers he is probably HFA.  

[SueNYC]

We were pretty lucky - becaus of NYU Child Development Center's excellent team - and even in the big ol' USA tere are only a couple of these full service centers - they spend alot of time explaining to us our kid and how he thinks.  But then, they have tested him for over 20 hours total - he is one of their favorite subjects.  As I said, we went through 2 years of parent training to learn how to stop the runaway train from leaving the station.

Alot of the academic problems with Asperger's (and I assume HFA) has to do with executive dysfunction.   Although, for some reason Sam seems to have skipped this deficit, many have problems with inferential thinking  and are too literal- making comprehending a literature book very difficult.  We had a kid in his old school that was a real hard core Aspie - and he was having trouble in school because he could not distinguish fact from fiction.  Stuart Little, in his mind, was a walking talking mouse.  Or, n the magic land of third grade, when all kissing is regarded as sex (and the kids are teaing each other about who had sex with who) - he stood up in class and proudly announced that he had sex with his mother.  His mom went to a psychologist once with him - and he was diagnosed with low self esteem.  the school was prodding me to talk with her because she couldn't face up to what her kid wa dealing with.

Me - I kept out of it.  He did draw the most intricate motorcyles that I ever saw - leading me to beieve that he was more HFA than Asperger's - because Asperger's have a terrible visual memory but excellent verbal comprehension.  It is those non-verbal skills they lack.

Many HFA's have a high intelligence - you just have to figure out how to teach him.  we spend alot of time reorganizing Sam's writings with him.  You have no idea how many fights we have had over irrelevant information being added to an essay.  Sometimes people with autism are very stubborn trying to get their own thoughts down - even though they are not answering the question that is asked.  We make him read the question out loud and explain why his comment is useful.  He takes practice - but we are getting there.  Writing, by far, is his worst are.  Though gramtically perfect - he gets caught up in useless information or he brushes off details.  Part of it is his ADHD, but another part of it is his autistic nature.  We tell him that the grader really doesn't care, he doesn't know him , and his answer is one of a thousand they might see.  The reader can't read his mind, they have a checklist in front of them, and thy don't give a rat's *** about that you would have preferred a different question to answer.  On a multiple choice - he is great - expressing himself is far more difficult.


It is especially hard of him because we come from a Type A family. My husband is an immigrant Greek - and the immigrants are perhaps the toughest on their kids.  To be honest, it was the only way to move up in American society.   Everyone has advanced degrees.  We spend about 3 hours on homework eat night (all of them) and sometimes we don't go to bed until 11.  My children all go to a Japanese cram school - which oddly Sam loves.  He tried his evil behavior tactics on the instructors - he slammed doors, he whined and groaned in his chair, he locked himself in the bathrooms and would burst out into tears. The instructors (all very Asian) didn't care - they were very calm.  They told him he was dishonoring himself and his family.  They said he could get upset - but the work was due (with corrections) during the next session.  This went on for a year and I was sure she was going to make him drop out.  The teacher looked at me - and said - We have 700 students - "What makes you think he is our only difficult child?" No one at Kumon (including my child with Ehler's Danlos (which makes it hard to write) and visual perception problems gets accommodations in testing.  Asians don't like to hear about learning difficulties etc., they just plow through until the kid gets it.  One of the kids there, he is Indian, even does echolia but he is kicking butt in math.  We spent a year on multiplying triple digits because Sam thought he created a new, more exciting way to do it. Every night I took out the calculator and showed him why he was wrong - and every night I shook my head.  It was like he would develop math amnesia.  But eventually, it stuck.  He is now on the Kumon National Honor Roll and is finally behaving.  As our ABA expert says - I can train your kid to do anything I want - it is the parents who are difficult to train.  To be honest,  every time we feel tired and give in - they have won the battle.  

What do when your son refuses to comply?  Sam sits in the guest bathroom - then we go in and ask him (every 15 minutes) is he ready to come out and do what was requested.    I think the longest we went was 3 1/2 - 4 hours.  It was exhausting because I had to hold the door so he couldn't escape and I had to not engage in any conversation with him - just the question.   Sometimes ABA really breaks your heart.  But now, we rarely have to  make the trip to the bathroom and it never lasts more than the first 15 minutes.  I am not a calm person - mostly I want to yell at him - so it is a good self-control exercise for me too.  At first, it was hard, because he would go into his imagination (something one can't take away) but eventually he would get bored or hungry.  Anyway, I was desperate to stop the fights that were tearing our family apart - and now, oddly, he is usually our best behaved kid.  

[MJIthewriter]

I like your post.
I agree. I'm trying to bridge that gap in my own personal quest... I'm trying to figure out what IS autism and what IS being human?

Are Autistic people REALLY that different than non autistic people or is it that we just perceive ourselves to be different because we lack understanding of each other's sides?

I do believe there is a theory of mind issue, but as I mature I believe all humans have issues with theory of mind. Because after all if someone is sharing their story on the net or over the phone about their house and you've never seen their house... You're not going to know what their house looks like. At best you either guess or just filter out that thought.

Perhaps for an autistic person, they are more aware of this deficit than an average human. To them it makes it more important to know what the house REALLY looks like before going on to understanding the rest of the statement.
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When I was analyzed by a psychologist, he told me I over analyze things. Perhaps that was connected with my autism.

Someone on this thread mentioned multiple choices vs. questions wanting an answer...

My issue was with questions like: "What did you learn from this class?"

I just stalled! Where do I begin?  Several mental-visual memories flash through my mind as I relive the experience... Okay how do I list all those experiences on paper? No wonder why I shut down and put "I don't know." with such things. Truthfully it wasn't I didn't know it was I knew TOO much and couldn't pick and choose w3hat was worth writing and what wasn't. Not only that but specifics like names, dates, etc elude me, so I'm trying to translate something visual into something verbal...

[Sally44]

Sue, have you seen my posting on the expert forum.  I am trying to find out about different types of memory retrieval, because, as you have stated, if I give my son the 'answer' and a choice of words/numbers so that he can match them he can do that.  If I don't show him anything visually or tell him the 'answer' verbally and just ask him a straight question that he has to recall the answer, he cannot do it.  So, if I show him the word 'come' and ask him "What word is it?" he says he doesn't know.  If I put a number of words on the table and ask him to "point to the word that says 'come'", he can do that no problem.  He is a very intelligent boy, but is not able to read or write or understand basic numeracy at the moment.  There may be aspects of dyslexia as well.  But he may need tests etc differentiating so that he is able to access memory and answer the question.  Another thing he frequently does, is I may say something that triggers some kind of information he has stored.  For example, once I said something about crabs, and he suddenly started spurting information about this species of crab in the Atlantic and gave me all kids of details of it.  When he had finished, I asked him "Where did you hear that", and again he said 'I don't know'.  Alot of the time my son is a kind of visual/verbal recording machine, but he is not always able to decode that information or make sense of it, or be able to retrieve it when necessary.   So I am kind of envious of other parents whose children are doing okay/well at school.  But I have also read and heard that many times they don't understand basic literacy/numeracy concepts until they hit their teens.  I think my son may have some problems with planning/sequencing/understanding the concept of time etc.  But he understands if he is being teased, infact he can convincingly tease or trick me.  He doesn't have any obsessions, which I am glad of, because I think that would drive me up the wall.  He can be literal and he sometimes seems to have gestalt perception where the whole scene is perceived as one thing and not the various pieces making up the whole scene.
He isn't at all bothered if furniture is moved around and is quite looking forward to us having some building work done on the house!  I know some children who haven't even recognised their own mother when she has died her hair a different colour.  And I remember Donna Williams talking about recognising her mother by her smell, her father by his tone of voice and her brother by movement.  
I think autistic people experience and perceive things in so many different ways that we are only just beginning to see the tip of the ice berg.  But I find it very interesting that there is such a diversity eventhough there are still recognisable core deficits although the profiles are all different.
I think it's very relevant what MJ says about how they understand open ended questions eg. what have you learnt today?  I have been told that that is almost an impossible question for an autistic person to answer and that they need a much more specific question to be asked.  For example my son has had a visual problem for as long as I can remember, but when he went to the opticians they would ask him 'What can you see?"  My son would answer as best he could, or not at all.  This time the optician asked him specifically "Can you see one or two?"  This time he could answer the more specific question and said "I can see two."  So now we know he doesn't have binocular vision.

[MJIthewriter]

"For example, once I said something about crabs, and he suddenly started spurting information about this species of crab in the Atlantic and gave me all kids of details of it.  When he had finished, I asked him "Where did you hear that", and again he said 'I don't know'."

That's like me. I pick up lots of information, but to specify a source I can't do so well, though I do surprise people when I can remember where I found something and bring it up. One of my problems is if I am quoting various bug facts, the facts I'm quoting may have come from a variety of sources and different years. I may be pulling up something I learned years ago, perhaps nearly 10 years in the past.
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What brings these things up? I don't know. Something triggers the thought. Sometimes these thoughts may seem unrelated on the surface. I find it quite handy when writing because that enables me to make my own metaphors and analogies.

Who knows perhaps I can make connections out of things that people may not normally connect. Perhaps that helps my writing. Who knows? "Autism" is just a general term... It's like calling someone "European"...  There's bound to be unique differences from person to person. It's that way with the non-autistic people.
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I used to think the world was black/white autistic/NT but that isn't...
My quest for knowledge is to see if there is a variety of autistic traits in many people. Perhaps it isn't just faceblind/non faceblind, but a gradual variation in people’s abilities to recognize faces. For some it may come instantly, but for many it may take a differing amount of time to come to recognize a person. I'm throwing that out as an example.

We do know there are distinct differences in the brain, but how distinct are they? I visualize the brain being plopped besides a snowflake. No two are alike. There’s going to be variation. That variation helps shape how people think and perceive the world around them. It may also play a factor in personality. Not just that but we get environment. With those two combos, no wonder why there is so much variation in people.

[SueNYC]

These are spectrum disorders - and as my son's doctors say - he is just a little aspie.  And even there the doctors fight among themselves - because he has a different attitutde with each doctor.  He is mean to the neuropsych because he made him take the celiac tests (which proved to be right on the money) - therefore, this doc ruined his life (not his problems with gluten mind you but the messenger). he hates psychatrists because he associates them with meds and he thinks they are trying to delve into his personal life (which is none of their business), and he likes psychologists (which he is apparently charming) because they are nice and give toys out at the end of the visit.  They salso, according to the psychiatrists, get a bigger budget for toys then the mean old psychiatrists.  

Sam doesn't have any particulaar obsessions.  He likes Bionicles and now he wants to start building roller coasters.  But generally he is pretty hip to pop culture and he seems to know what is cool and what is not cool. He just gets so anxious when he meets people that he acts like a fool and he hass little common sense.  He is not good at judging people and ther intent - as his docs like to say - he half gets it and he is considered at the very bottom of the spectrum.  

I still think there is an inherent difference between HFA and Asperger's (and their is evidence for both of them being the same disorder and evidence that points against it).  In the end I don't think it's that important - though the HFAers look like they could need even more services than the Asperger's.  And I say that because their life outcomes (at least with a high IQ) seem to be vastly different.