Still searching for help

I am new to the Asperger aspect......My son is 7 yrs old.....he walked at 9 mo.....talked very well.....I thought he was very advanced for his age.  Yet since 3 we have hit a plateau.  He is now in 1st grade for the second time.  We have been working with our pediatrician for a little over 2 yrs know.  We have seen a psychiatrist and had him tested through her.  To no surprise his IQ was high average (121) yet she said administering the test was difficult...concentration, not following direction, getting off topic, ect.  These are things he does daily, maybe by the hour!  My frustration is this....no one wants to diagnose him.  They say that ADHD, ODD, Asperger, and Bi-Polar are all to close to call at this point.  WHAT?  is my first response.  He has so many social issues....he wants so badly to have friends but cannot keep them.  He annoys, gives them no personal space, and is very "touchy".  He is a super sweet kid, yet reacts when others instigate.  He seems to want to please yet cannot ever achieve the "acceptable" behavior for the time, place, ect.   After reading about Asperger, I see that ADD and possibly ODD can and have been "intertwined" with Asperger.  Is this correct?  Could he have all the above?  Confused and discouraged, but wanting some answers.   Side-note: We have tried herbal,Concerta,Focalin,heavy discipline, light discipline, lowering our expectations, you name it!!  The only thing that helps noticeably is SCHEDULE!!!! If he is on a set schedule he seems to "cope" better!  Thank you for your time!

[Natta1980]

Sounds a lot like my son - he was pretty advanced compared to his peers, had better vocabulary, played with more advanced toys propr to  3 years old. Where he started lagging is when it was time to go to "school", participate in large group activities and have conversations with peers. There are no delays in his expressive language, however, he lags in "pragmatics" - small talk, answering abstract questions, etc.

Where do you live? US? If so, get school to evaluate him for subject or receiving additional help, they will put together an IEP (individualized education plan)

As for having all of the above - some Aspergers symptoms are very similar to ADD and ODD, some people even argue to include ADD into pervasive developmental disorders spectrum. If I am not mistaken, all people with Aspergers have rigid/repetitive behaviors to some degree. If your son exibits symptoms from some but not all diagnostic criteria, he will likely to get PDD - NOS diagnosis (Pervasive Developmental Disorder not otherwise specified).

You say that schedule helps - do they use it at school? Visual schedules make a big difference at school. My son is the best when he knows what is coming next and he can estimate how long it is going to take. I.e. dad says he will be home soon and will not show up for 8 hours - we having a problem. Dad says that he will be home in 8 hours - he is fine. I am kind-a-the same way. Motivation is a problem for kids with PDD as well - they need to know what is expected, how long it is going to take, and they have to do that (no getting out of that)

Please get school on board. Let me know if you have any questions about what you are entitled to by law thru the school system - we've been thru that already, but our school is wonderful, they are very supportive and focus on positive things only. Which is very rare these days (based on conversations with other parents who had to fight their schools).

[SueNYC]

Wow.  Sounds just like Sam - he's 10 and we still have no sure fire diagnosis (it's a close call).  People with ADHD and Asperger also have what is called executive dysfunction.  ADHD can also make it difficult for some kids to make friends.  One of my children who has ADHD also has OCD which we see a psychiatrist about once a week for CBT).  She has Tourettes (she is not the Aspie).  Now at 8 she is making a lot of friends but before that it was a mess.

So two kids with ADHD - what brings the Asperger's into play.  He has some obsessive interests (but he is not pedantic about them).  But what really falls apart is the social skills - he desperately wants friends but it is like watching a 2 year old befriend a child of his age.  He gets all tongue tied and reacts very inappropriately if he is angry with someone.  To make things more confusing, his ability to infer is in the 99% when given pictures or social situations verbally but he has trouble when it comes to the day to day stuff - like neighbors and such - we just want to shoot ourselves with what comes out of his mouth.  

When the doctors were all confounded the sent him in for a full neuropsych - it didn't answer all the questions but it gave me a better understanding of why he does what he does.  It also bought us a ticket to a private school for Asperger's and ADHD.

[chull]

You know I never thought about making him a schedule for school.....I have no idea why that never occurred to me.  It sounds like our sons are very similar.  Especially about the expressive language.  Could I ask about some of the things included in your son's IEP.  Our school is actually a "Blue Ribbon" nationally recognized campus, but they haven't helped me very much with this.  Yet I am not very assertive either.  I was hoping he would "grow out of it" I guess.  We have struggled in ANY group of kids for about 3 yrs now. This includes church groups, extra activities, school, ect.   I am the children's minister at our church and I get so frazzled when Stran is there.  That is a horrible feeling!  Not even being comfortable with him in a group of caring christian people!  Another question I have is...My son literally ***** the neck of his shirts, he is a gazer...he will be fixated on something and "zone out", and this maybe just a kid thing (he's my oldest) but he still wets the bed nightly.  My doctor said that we shouldn't be too concerned about that right now, but I have asked some other mothers and haven't found 1 that their child does this! Well I appreciate all your suggestions and will follow up on it! Blessings!

[chull]

The making friends part, I can totally relate to!  He can even make friends, he just can't keep them.  He plays a lot better with his 2 yr old sister than anyone else!  I live in Texas and there is a private Christian school.....I think I will look into a possible "scholarship".  I know the class size is small and that in itself I think will help Stran.  He does better the smaller the group is!  Thank you for your comment it was very enlightening! Blessings!

[Sally44]

I presume that you have asked your paediatrician to refer your son to a multi disciplinary team of professionals who have experience in diagnosing autistic spectrum disorders?
I presume he has been assessed by a Speech and Language Therapist who also has experience of autistic spectrum disorders, language processing disorders, language impairments?  There can be (and usually is) a big difference in the childs ability to express themselves opposed to their understanding of what is said to them.  This can be down to language processing delays, auditory processing disorders, Semantic Pragmatic Speech Disorder etc etc.  Also, sometimes language 'appears' advanced when the child has really learnt language by using echolalia.
If your son is performing much better with schedules at home then that is what should be happening at school, and that is the kind of supports that a child would get with a diagnosis of an ASD or ADD/ADHD etc.
If your child hasn't been formally assessed I would ask for it to be done.  Whatever diagnosis he gets, it is not written in stone.  Diagnosis can change and frequently do.  But without a diagnosis it leaves the school not sure of what they should be doing and could mean that your child is not receiving professional input in school or certain therapies that he could get if he were diagnosed.  
So I would ask for 'something' of a diagnosis, even if it is PDD NOS, so that everyone knows what he needs.  
He will need his daily timetable at school to be visual and he may need alot of input with learning certain concepts as well as things like change and transitions.  He should also get support during playtimes/dinnertimes and should have access to dinnertime clubs.  
A speech and language therapist should be putting together a programme for him relating to the social side of speech (check results on receptive speech), and social communication skills.  He needs to be taught these.  An Educational Psychologist should also be involved with school.
If he has sensory issues an Occupational Therapist needs to assess him and put together a programme for him in school.  
By law, the school has to meet his educational needs.  If no-one is prepared to put on paper what they are then they won't be met.

[Sally44]

It is the Speech and Language Therapist who is supposed to assess and address Social Communication difficulties.  My son (also 7) wants to interact but doesn't know how to.  His SALT is putting together a programme to address this.  My son also goes to a Social Interaction Club at school which is overseen by SALT.  You can also look at the assessment process called SCERTS.  This is widely used in the USA and all professionals can use this to assess social skills.
If he wants to socialise then he needs to have access to mainstream children.  However it must be on the strict understanding that they are going to support him so that he succeeds, otherwise he will only experience constant failure which is bad for self esteem.  So write a letter to his SALT.  If his current SALT does not have experience of autistic spectrum disorders then phone up the department and speak to whoever does and write a letter to the department asking that a suitably qualified SALT with experience of ASDs assesses your child.  Always put everything in writing because that is your evidence if you ever need to go to an educational tribunal.

[Sally44]

Another thing that I found useful for my own son was I found a Play Therapist who had experience of autism and my son would go for fortnightly sessions with her.  I firmly believe that this motivated him to want to interact because he found that playing with someone could be fun.  This therapist always let him lead the play rather than trying to get him to play in a way that she wanted.  I think it was similar to Greenspan Floortime.

[chull]

Yes on the play therapy.  We did this last spring and over the summer!  It really helped him "open" up to the idea of not sitting in the corner and playing alone.  Stran's frustration is that when he does try and start a conversation his thinking and level of understanding is on another level.  He just can't seem to get his point across when he tries to communicate children his own age.  His principal actually told me Friday that there is absolutely nothing wrong with my son except that he is lazy.....What?  I found that very discouraging.  My son LONGS to be accepted.  It seems he is almost obsessed with "finding a friend" or pleasing me.  Yet he just cannot "keep up" on his work (especially if he has to write or read).  Yet his teacher says that he isn't really talking or goofing off, just staring off in space like he has no idea about what he is suppose to be doing.  Another interesting fact she brought to my attention is his failure to keep information to build on.....he knows things very well when he studies them but if the topic gets brought back up later then it's as if he never learned it.  She thinks Aspergers isn't the correct diagnosis...yet she says there is definitely something that we are over looking.  She is very supportive and understanding.  We are trying the schedule and timer for assignments on Monday.  The only thing we are worried about is that he is so fascinated with numbers, sequence, so forth, that we are afraid he may be obsessed with figuring out how much time he has left or that his schedule is "off" by a few minutes.  Trust me, he will notice if it is different in the least little bit.  We are filing out paperwork for a program at a University about 3 hrs away. They are accepting new studies for Fall so pray we get in! I just want to say THANK  YOU.   All the caring people on MedHelp have helped me so much already and I can't wait to share our progress and so forth with you all!  You are a blessing to me and my family!  

[Sally44]

People on the autistic spectrum have difficulties with 'connections'.  They do not get the implication of information given to them and if they do try to put together information they can often get the implication of it wrong.  That is why they are top down learners and not bottom up.  This also means they have difficulties with 'generalisation' they can learn something in one environment or with one person but in a different environment or a different person they forget what they have learnt.  That is why new skills have to be taught to them by one person and when they have learnt it it has to be generalised out in different environments and with different people.  This type of learning in one environment can also link into sensory integration issues.  What is your son like if the house is changed ie. furniture moved around, or you take a different route into town, do these things upset him?
As he also has a speech/communication disorder he basically isn't going to understand lots of verbal information/instructions etc.  So he sits and stares off into space because, for him, it is like he is sat in a classroom where everyone is talking Chinese and he doesn't understand the language.  That is why an experienced SALT needs to assess him.  If you can go private.  I had exactly the same comments said about my son.  I knew my son wasn't lazy etc.  I knew that somehow he couldn't do it.  You just need to prove that and an experienced salt would be able to do that.
children with autism can be either way with time.  Either they have no understanding of the passage of time (like my son), or they do have an understanding of time and everything has to be exactly as they have been told eg. dinner in 10 minutes has to be exactly that.  But again, concepts can be taught to them and they need to be taught coping strategies for when things don't turn out to plan.  At my son's school they have timetables in symbols.  They also have a 'change' symbol and a 'surprise' symbol for when the timetable has to be changed.  

[Sally44]

If your son is appearing to learn and then forget it also means that he is rote learning.  Ie. he is using memory to learn huge amount of information without understanding the 'concept' behind it.  If he gets the concept and it is 'generalised' into other situations he will retain the learnt information.  This happens alot with my son.  For a long time we thought he could read because we would look at his reading book once and he would immediately memorise it.  But the same words in different books he couldn't read.  So basically he has very little phonological awareness.  He cannot look at a word and make out the separate sounds, blend them together and say what the word is.  You need to be able to do that to read.  He can only recognise the first letter sound of any word, so if he was shown flashcards that said: when, what, with, Will, etc and was asked to point to the word that said 'what', he couldn't do it.  If he was shown the words: sit, cat, fat, me, what and was asked to point to the word 'what', he could do that because he would look for the word that began with 'w'.  But if I show him the word 'what' in another book and ask him 'what word is this' he has no idea.  This is what autism is like.  In some areas they appear genius, in other areas even basic tasks appear impossible to them.  We are fortunate to have bright, verbal kids.  But they need the right educational and professional support to make progress academically.

[chull]

This sounds just like Stran.  I told his teacher last year he sounds the 1st letter and the last letter well and it is as if he doesn't even care about the "middle" of the word.  Their spelling list usually contains "ild" and the words would be wild, mild, ect......so he does pretty well on test because he only has to figure out the first letter sound...which is what he is best at, then put whatever synonym fits. So he can do that.  But there are always 1 or 2 words that do not follow that pattern and always gets those wrong!  I am taking all the information I gathered to the psych we saw last spring and get him back into play therapy ASAP!  Thank you, I know I keep telling you this. I assume your world was as mine has been for the past three years, so you know that this is such a BIG help!  

[Sally44]

It is difficult sometimes to identify what the actual problem is.  For example I thought alot of my sons difficulties were down to Sensory Integration Disorder.  I knew that he had a severe speech and communication disorder, but it was only when I put on paper what he struggled to do from a speech point of view and passed that over to the private SALT, and then she observed and assessed him and sent her report to me - it then became obvious that his main barrier to learning was down to speech disorders and delays and semantic pragmatic disorder and auditory processing disorders etc etc.  When I saw how poorly he performed at listening to a story and then telling what the story had been about - and he had completely missed whole chunks of the 'reason' behind the things said and done in the story - that it became clear that in school he basically didn't have a clue as to what he should be doing or the implications of what he was doing.  Once that was explained and made clear to him he is able to learn and demonstrate learning.  But it has taken me nearly 4 years to get to the stage I am at now and I am sure that there will be other revelations further down the line.  
But if there is anything your son is struggling with, write down what he cannot do or how he is attempting to do it and ask the professional to find out what it is about the task that he cannot do.  Once you know that he can be supported so that he can do the task or have support to do it.
Good Luck.

[SueNYC]

He may be having "working memory" problems.  In America, most of the evaluations are done by a neuropsycologist or school psychologist.  Some of these tests cannot be done at your school and you may have to go to your local Board of Ed or have your pediatrician refer you to a specialist.  The Board of Ed can pay for a private evaluation but you have to ask for it.  You may have to threaten an IEP hearing (but since the IEP hearing costs more than the evaluation they usually grant it).  You have rights under federal law - especially if it is Aspergers.  If your child has Aspergers than the state may even have to provide an aide even in a regular private school (which will make the private school more willing to accept him).  If it is not a special ed school you will be stuck with the tuition.  

The private evaluation route usually takes a longer (but it holds more weight if you end up needed more specialized services).  Even n NYC (the land of shrinks and people who need them) the wait can take up to six months after intake. A good evaluation takes anywhere from 12-16 hours - a school evaluation takes about 3.  School districts try but they are hampered by the sheer volume of children they need to test so they don't do subtests.

At an IQ of 121 he is definitely hitting the gifted side.  That usually really screws around with standardized test results (especially the level of testing that they do in schools).  I would request a Tower o London Test.  It tests executive dysfunction - if he bombs that you are more looking at a possible Asperger's/ severe ADHD kid. It is moving blocks in a certain order - and they are notoriously bad at yet.  there was also a test involving 15 shapes on a large piece of paper.  They look at it. The tester moves on to something else.  Then, after several minutes, the tester comes back and quizes them on what shapes existed.  Then they are told to draw it.  Sam identified every shape but couldn't draw them - another sign of severe executive dysfunction.  Also there is a test where they have to draw a hand - that means a lot to these testers.  Academics were easy - these tests were impossible.  Schools don't give them so the underlying problem may not be identified.  

We need Sally to yell at me to go back to his neuropsych and list all the individual tests that were given and why.  

The reading thing isn't a very useful guideline for Asperger's.  Asperger's children seem to have reading abilities that mirror the rest of the population (and believe it or not many actually don't have trouble comprehending what they read - at least that is what our Asperger expert says - in fact the higher the Q the more they get) so it is very common for them to have subsets in the 99%.  In fact, one of the ways they distinguish Asperger's from HFA is their reading abilities.  Many people with Asperger's actually are incredible linguists for their ability to absorb language.  My son learned to read (not understand) Hebrew in 6 weeks at the age of 8 due to this weird ability.  Both his Hebrew and Greek tutors were amazed because he was usually humming or playng with a Bionicle as he absorbed their lessons.  They thought he wasn't paying attention because he doesn't make eye contact.  

If his IQ was 121 he obviously has some good strengths.  You should definitely have them explained to you and you should focus on them.  

[Sally44]

As each child is different with different strengths and abilities, it does take time to weed out where the difficulties are in the process.  For example a child may struggle with numeracy because they have poor working memory or poor auditory memory or difficulties with concepts, or dyscalculia, or attention and focus problems, or visual perceptual problems or other sensory issues, or generalisation problems, or problems with writing eg. motor co-ordination or fine motor problems, or severe language problems, or problems with planning and sequencing etc etc.  The list goes on and on and it takes an experienced professional to assess and see what is the main barrier to learning because any one, or a combination of the above, will cause a child to struggle with numeracy in a classroom situation.  
But any parent who is given the brush off with blanket explanations as to why their child is failing should not be satisfied.  
Over the last 4 years, due to professionals general disinterest and incompetence I have become something of an expert myself and I now demand that they explain to me exactly why my son is struggling.  At one point last year, I managed to pin down the Ed Psych and ask her what assessments she had carried out on my son.  She sent me a letter in which she stated that as a general assessment had been done two years ago which clearly set out his areas of strength and weaknesses that she didn't feel that formal assessments would add to our knowledge and that she had decided that non-standardised classroom assessments would give a better indication of his abilities and difficulties.  So I wrote back asking her to detail to me exactly what non-standardised assessments she had carried out in the classroom and what insights had that given her into my son's strengths and abilities.  I then got a letter back from her in which she enclosed a copy of a meeting she had had with the school special needs co-ordinator in which he had stated that they did not require the input of the Ed Psych as they believed they had a good understanding of my son.  So, firstly she had lied because she hadn't actually done any testing at all and secondly the school has to invite the Ed Psch to come and observe/assess a child and my son's current school had refused that on the grounds that they had a good understanding of him eventhough his IEP results proved that he was losing skills.  That was when I moved my son to another school and phoned a Special Educational Needs lawyer.  

[SueNYC]

You definitely may want to contact an advocate.  they usually work on a sliding fee.  Even a consult w/o full services can be useful.  DO NOT TRUST YOUR SCHOOL SOCIAL WORKER.   THEY LIE - AND SOMETIMES THE PRINCIPALS DO TO AS TO WHAT YOU ARE ENTITLED TO.  THEY WILL TELL YOU THAT THESES SERVICES ARE IMPOSSIBLE TO GET.  They aren't but they go to the loud mouths like me who know their rights.  They are paid to keep costs down by the Board of Ed.  

[Sally44]

Regarding play skills a SALT should put together a skills programme using an assessment tool such as SCERTS.  For example my son does not initiate.  So he will be taught how to do that in a pupil therapist setting, then a social skills group setting, then the classroom setting, then the playground setting.  He will also probably be taught some rote learnt scripts to use to initiate play or sustain play and will be taught to learn these in different contexts.  As the private SALT said 'success breeds success'.  These children are very good at lifting whole scripts from TV or DVDs and using them appropriately, so when they are taught rote learnt scripts to use they do tend to pick it up and use it appropriately.  They just need to be taught and shown how to do it and for that skill to be generalised.
I hope myself and SueNYC aren't sounding like two bitter mums.  We don't want to frighten you.  We just don't want you, or anyone, to go through the same stuff that we did.  So make sure you know your rights and double check anything you are told.  If my son hadn't been refused a school place and I hadn't got a solicitor and private reports I would have been ignorant and would probably have accepted anything they offered me and been grateful for it.  But they refused him a place, which forced me to find out what my son's rights were.  I am now in a position where I know that most other parents at my son's school do not even have a Statement that is legally binding because it is so poorly constructed.
I found out today that the dinnertime clubs my son goes to do not continue after year 3 (age 7-8).  That can only be because not enough mothers have this need itemised in their child's statement.  If enough children need structured activities and adult support to access play itemised in their statement then the school would already have that provision after year 3.  It is in my son's statement, so next year he will be supported.  That may force the school to continue the clubs into year 4 which will also benefit other children.
I know it helped SueNYC that her husband is a lawyer, and it helped that I have a background as a legal secretary.  Having a legal background means you know the power of the law.  Codes of Practice are brilliant!  In the UK a Statement is a legally binding document and I presume the IEP is the same in the USA.  It is a contract between the State and the child.  That is why they try to wriggle out of doing them because they are legally bound to provide all the services and provisions itemised.  So if the Ed Psy is off sick for a year they have to make sure they buy in that provision to cover your child.  Prior to the Statement I had staff off sick for over a year, professionals would not turn up to meetings, the school would not set IEP targets and wouldn't ask for advice.  It was a joke.  Now they have to do it all by law.

[rosiegurl]

This is just some uplifting information for you, please do not take nothing i say personal i am a aspie mom with a aspie kid and i have tried a million things and had seen what my mom did with me she made me feel loved, no matter what. If i said before, I will say it again.. breathe. and stay encouraged. Aspies are a very special breed of child which makes us special too. I want to just say some things, they live in worlds unknown and unchartered, the younger ones with the active imaginations are usually closer to the aspie child than anyone else, because they are more willing to go along with the program. Also, O-Yes on the play therapy. it is something that helps on sooo many levels. My kid is 11 and he is more embracing of his 5 year old cousin because she is right threre and poses no threat, well as she grows up and gets her friends and matures I see the push between the two. It is very interesting but there are times i have to just get in there and put my inner child to work this helps me to get into his world and understand his thinking, where he is at the moment, this also builds a trust factor between the aspie kid and the parent and other things too. It is important that you learn to laugh, to take it easy, and take care of your self. Because it can get trying. now, lets get to the spectrum of things, no aspie kid is the same  there will be lots of diagnosis before the main one. It is the highest functioning form of autisum and its like a cocktail that can never be coppied, think of it as your kids very own blueprint and embrace this. of course you have to deal with the diagnosis, read, research, don't be afraid to try new things think out side the box, and another thing just so you know that aspie kids are very litereal so be straight with them don't say its raining cats and dogs, tell them its raining alot. but ieps salt and many other programs will help. but make sure that you are doing the research, get tapes and dvds, books, get on line and keep up the fight for your child. its hard, but it is rewarding you will see. Build a very positive support group that is key and so is redirection. Be strong and remember to breathe, don't try to be something that you are not, you are aspie parents and we are the coolest parents on the planet. keep at it. keep up the good work.