'Borderline' diognosis for my 5 year old

We took our 5 year old to the gp at the end of last summer because his behaviour was causing us concern, he is a little obsessive about a few things - lego, star wars to name a few.  He is prone to very bad temper tantrums - when he's having an 'outburst' there is absolutely no calming him down, it's a case of sitting it out.  He has a bad problem of throwing himself about - he has big problems at school listeneing due to his inability to keep still.  His most common movement is throwing his head back/forward which is disruptive to the rest of his class. He has been known to put his head in the other kid's laps too.  All this aside he can be the sewwtest most charming little boy in the world - but only on his terms!

We were referred to our hv who after discussing behaviour charts(which we have tried with not much effect) suggested that she refer us to a consultant.  We had our appointment in November 07, it went well although my husband couldn't make it due to work commitments.  The Dr went through donnie's reactions to situations and asked lots of questions this went on for about an hour and half.  During this time he had supplied Donnie with some Lego - this is one of his obsessons - he spent the whole time building space ships ect and was a picture of serenity.  

The result of this appointment was that he ticked 5/10 boxes.  The dr explained that a diognosis of Aspergers Syndrome is given with 6 boxes ticked  so he is what is known as 'borderline'.  

I have good and bad days with my son - the good days are fantastic but the bad days make me soooo angry and I find him impossible to deal with.  Any tips on helping him would be much appreciated.

I should add i have 3 other children aged 7, 2.5 and 10 months - he bullies the 2 year old a lot.  

I really worry about his future and how he will  be when he grows up - he's strong now, how am I gonna handle a big teenager???

[SueNYC]

I got a "borderline" too.  ANd that is after over 20 hours of testing and three doctors that specializes in autism - don't focus on the dx.  Borderline means that he isn't a waiting room diagnosis (some people are) or the doctor had to stretch criteria.

I was going to write a long message - but I will make it simple.


GET AN ADVOCATE

[renna3265]

hi there. I have a 6 year old son with two differing opinions from so called professionals. I have been told to see Dr Tony Attwood in Australia. I don't know if he may have any colleagues where you are but it may be worth a google search to find his website, contact him and ask.  best of luck to you.

[tarasmns09]

Hi.  My son was diagnosed with mild aspgergers and sounds a lot like your son.  My first piece of advice is that your son needs to be in a very structured environment.  It is really hard to do and so many times I had to walk away so I didn't lose it, but once they are on a very structured routine (no bending) uncontrolable fits/tamtrums become less frequent.  You should also have an advocate that can help you with your sons school.  At least where I live children on the mild spectrum fall through the cracks.  Speech therapy is also very helpful even if they do not have a speech problem.  A lot of speech therapy focuses on communication and unspoken social cues.

[Sally44]

What was the profession of the consultant you saw (clinical pyschologist)  Usually observations are carried out over a longer period of time (it took me 18 months to get a diagnosis) and my son was seen by a multi-disciplinary team that specialised in autistic spectrum disorders.  He saw Speech/Language Therapist, School Paediatrician, Clinical Paediatrician, Educational Psychologist, Clinical Psychologist, and had assessments of Social Interation/Communication.  I also got private reports from Play Therapist (to give an indication of social difficulties) and Occupational Therapist (for sensory difficulties etc).
Did your son have any language delay, echolalia, not understand pronouns etc?  If there were no noticeable speech/language problems then you are usually looking at a diagnosis of Aspergers or traits of Aspergers as being more likely.  Read the clinical criteria for autism and aspergers under DSM IV to get an idea of what professionals are looking for.  Ask the consultant you saw what your son 'failed' on to not get a diagnosis.
Your son is only 5, and you may find that as he gets older over the next couple of years, that he may have problems in other areas such as Planning, Sequencing, Memory, Understanding Time, Predicating Outcomes etc that will have an affect on his academic work at school.  He may breeze through school academically (more typical Aspergers) or he may struggle to understand basic numerical concepts and phonics (more typical autistic spectrum).
So you could go back and ask for a multi-disciplinary team evaluation involving Health professionals and Educational professionals.  
Get a folder and start collecting all correspondence, reports, etc.  Write down your concerns so that you can get the relevant professional to answer your queries.  All autistic children can have good days and behave appropriately.  You need to be highlighting the unusual behaviour (as compared against peers from a developmental point of view).  Read as much as you can about autism spectrum disorder and other conditions that tend to cluster around autism such as ADD/Sensory Difficulties.  Join a support group so that you meet other parents/children so that you can see the wide variety of how these conditions affect our children.  Speak to parents about your concerns as they will come up with some really good/useful ideas and tips.
It is quite possible that even after all that, that your child has some autistic traits, but not enough of them in all the areas required for a clinical diagnosis.  But you still need those traits recognised by professionals so that supports can be used in school.  Unfortunately, it is much harder, without a diagnosis, to get any extra provision/support in school but through support groups you will get the emotional support and acceptance that you and your son may need.

[Sarahbams]

Thank you all for your comments, they are very useful and informative.  

He has no problem with speech - infact was talking very well at an early age - he could recognise numbers and count to 10 when he turned 2!  We have seen the speech and language department which have sent a report to the consultant/school and myself.  It basically said he is above average with vocablury and has a good understanding of language but would benefit from being part of a social group(which he is at school already).

As for school - he is on 'special educational measures' as whilst he is good academically he has big problems with sitting still enough to do the work/writing required.  His teacher says he has so much to give in class it's just exctracting it that's the problem.  

I have developed a clamer attitude towards things in the last month and am letting him be 'himself as much as i can.  I let him go to his room and look at 'lego instruction books' when he comes home from school rather than asking him lots of questions about his day.  I have also made a shift in the morning routine and have regressed to helping him get dressed as soon as he's up rather than having a battle of wills and making him hurry.

We have a follow up appointment on May 13th - I have all correspondance and reports ready to take and my dh is taking the day off work to attend too.  I'm determined that we will make progress and get the help for him that he needs.

[SueNYC]

Good luck.  Sam also loves Lego.  Have you sat down and built it with him.  We find that when we sit down and build it with him (I know more about Bionicles than any 42 year old should) he is far more communicative with us.  We also read alot - at 5 Sam loved the Secrets of Droon series.  Now, that he is 9 and reads faster than I ever could - it is a struggle to keep up with the readings - but I try.  Anything that helps. Sometimes we just sit and watch him play video games.

Good luck - a box check system is not a good way to determine if a child has Aspergers.  If this is what universal health care means I truly hope that America keeps far away from it.    

[Sarahbams]

Yes, i have built loads with him including a Batmobile and Imperial Star Destroyer. He's much better at reading the instructions than I am!  I watch him on the Bionicles Website, he knows exactly what he wants to look at.  
We don't let him play computer games ie. ps2 or Wii very much as he can't cope with not being able to do a certain bit and all hell breaks loose.

[Sally44]

From what you've said you could be looking at traits of Aspergers or a full diagnosis.  The not being able to sit still may be a number of things.  Does he have any sensory issues?  Is he over or under sensitive to anything?  Or there could be difficulties with focus/attention (ie. he can focus pay attention for hours on what he is interested in but cannot make himself pay attention to what he should be doing in class).  Or there could be some traits of ADD.
Alot of these children are very good at puzzles, lego, bionicles etc because it taps into visual spatial skills, that is why alot of engineers are on the spectrum or have autistic traits!
My son is 7, and most mornings I still have to help him get dressed otherwise we would never get out the house and my stress levels would be through the roof and my son would be in meltdown.  At the weekends he sorts himself out.  Sometimes there are difficulties with sleep.  My son tends to find it difficult to get to sleep and then difficult to wake up.
I'm glad you're not stressing too much!  Try to go with the flow.  I'm glad he seems to be doing so well academically because so many parents have concerns about school.  Anyway, good luck and let us know how you get on.

[SueNYC]

We had that problem when he was 5.  We couldn't even turn off the  TV without 45 minutes of hollering.  We ended up buying a TIVO.  It took us 2 years to get him to turn off the TV without a big fuss.  we give alot of warnings 15 minutes - 10 minutes - 5 minutes etc.

[SueNYC]

As far as being angry, which I used to get, my husband (who is used to clients screaming at him all day) - you have to ask why are you angry?  This isn't going to get better tomorrow - and we have learned that one good week - may fall apart the next.  

When things were really bad (with a proper school setting our life has become bearable again) my husband took me aside.  He said - who knows what the future will bring.  He is anti-authoritarian - maybe his attitudes will get him sent to jail or worse (and this was a 7 Year old at the time), maybe he won't be employable...and the list went on and on.  Let's create good memories and stop being so angry at the situation all the time because none of us no what the future will bring.  It's not worth it.  

I don't know what your kid does - but mine has caused us to have several toilets replaced, he guts furniture because how things are made fascinates him (we have no couch), went through a stage when he was secretly digging large holes through walls (to make a time portal), disassembled a 200 year old clock (that was worth a mint) but kindly took a picture before he did so (so I could remember it), was arrested by his principal for sitting in her bathroom too long was kicked out o public school because he refused to do any work for 2 years.  At the age of 8 he was trying to get the other children to realize, on a daily basis, that the American school system was a byproduct of Prussia's attempt to create automans under Frederick the Great.  Needless to say, the other third graders thought he was weird.  He refuses to wear out unless a daily schedule is posted, won't wear and refuses to wear underwear.  He won't put on his sneakers correctly - he breaks down the backs - all in all, a very frustrating child.  At 9, he has moved into his George Orwell phase - so we are curious to his next rebellion.  Right now, his school director claims that he is preaching to the other children with aides to get rid of them.  He is calling them their wardens and oppressors.  Sam had an aide once - he marched into the school principal and gave the ten reasons why the aide wasn't necessary.  Then he proceeded to escape throughout the school all day to evade the aide until we got rid of him.  So cheer up.

I seem to be raising a social malcontent.  We assume that he will be some eco-terrorist or a criminal defense lawyer when he grows up.  My only advice is to take away subversive books when he starts to read.   The obsession with Lego I can handle.  

[Sarahbams]

We've had our follow up appointment - the consultant has decided that Donnie does show some traits of ASD - particularly Aspergers BUT he also shows signs of ADHD.  This was a shock for me.

He is now going to be assessed for both - I've had a load of qestionaires and the Connors's parent rating to complete and have given some to his teacher too.  
I was wondering if anyone else has experience of these tests/assesments.  His next hour appointment is 9th July then consultant said she should be able to come up with a diagnosis in our appointment after that on 9th Sept.

[TLC37]

Sarahbams - Your son sounds like my 3 year old daughter. I'm glad you are posting. We are also seeking some diagnosis. ChildFind 'passed' her because she is not developmentally behind. So we are moving forward. The ChildFind people told dh that 'sometimes it's better not to warn them' about transitions (re:her frequent tantrums erupting from changes in the schedule). That really made me doubt their knowledge about their job! Yikes!

SueNYC - Wow, you have your hands full. Thanks also for posting, it helps put these smaller issues into perspective. I will make sure my copy of "The Monkey Wrench Gang" stays hidden as my daughter gets older! :-)

[TLC37]

Oh, I stopped getting angry when I accepted in my head that she has a real problem. And once I realized *I* am in control of how *whatever* is going to turn out. When I realized I was in control, I made myself be a better parent. Now, she's only 3. I am not always going to be in control, but for right now I am... and I get by day to day much better than I did last year.

Mostly my dd is a delight and good girl. Her defiance is typical of any 3 year old, not a problem for me. It's her tantrums that are hard. She cannot self-calm. So we give her a timeout in her bedroom, and I have been trying to teach her ways to calm down for herself. I don't abandon her in timeout, just remove her from stimulation. It hasn't worked yet but I will keep telling her 'let's count to ten and take some deep breaths' until she really does it. Since she doesn't calm down, after a period of time, I will use what works for her, which is me rocking her and singing a lullaby. It usually takes till the third lullaby and her trying to kick or slap me. But then she is calm, apologizes to me without me requesting it for yelling and crying and we discuss whatever upset her. She always needs a logical explanation. She accepts grown-up explanations. (If I wouldn't let her have her jump-rope say -not that she can actually jump rope!- and that caused the tantrum... when she calmed down, I could tell her I didn't want her baby brother to play with it because he could get hurt. And we would not ever have that fit again on that subject.)

My concern now is just when she enters the school system. I have considered homeschooling, as it is quite popular here, but I am not sure I have the stamina. So I have to see what my options are. I just accept her as very bright and weird, and I want her to get a good education. I am so glad I found this forum... I feel so much better in just a few days of posting here!

[Sally44]

I think everyone with a child on the spectrum, autism or aspergers, will recognise the 'not being able to calm down' bit.  They do get flooded with emotions and cannot bring it under control themselves.  My son says he can't stop the feeling, and their reaction does appear out of proportion to the event (in our eyes).  I think we just have to try to teach them calming/time out techniques.  If the child is verbal they can sometimes give you suggestions themselves.  But this is a lifelong thing and some adults still have issues with meltdowns.  One woman posted that her sister had actually hit a policeman whilst having one!  But when they are like that (depending on sensory issues), sometimes talking to them or touching them can sometimes make the situation worse.  You just have to try everything and see what works for you and your child.

[ShadysMama]

Hi,

My son is 5 1/2 and has just been diagnosed with Aspergers.  They said however that he is only the 2nd child out of several hundred that they have viewed that has learnt to understand situations and to read emotions and feelings.  He does however have a hard time with social situations, mood swings, processing information (unless he is interested in it), he likes structured routine, and finds it very hard to focus on things that don't interest him.  He doesn't like conversation much, and will only talk to you on his terms about things that he wants (mostly questions or trying to get information out of you so he understands things better, ie. when he is watching tv, or if we are out and about and someone does something that he doesn't understand).

Behaviour can be challenging we can have a real good run of 'good days', then a run of 'bad days' where he can't be occupied and is very badly behaved.

Our god send is the '1,2,3 Magic' Technique.  It's simple to use, consistent (we use it, the school use it, nan uses it etc.), and my son completely undestands this technique.  

And also if we need to hurry or if we need him to stop doing something we count down from '5 - 0' and he NEVER wants me to win by getting to Zero!!,

The specialists were AMAZED at how much he understands and has learnt to understand and could'nt get across enough how rare it is for a child with Aspergers to cope as well as he does.  I think this is down to hard work, and support!.  He has 1-1 support at School all day, and we have understood his problems and how to deal with them since he was 2 1/2.  I work very hard to explain emotions, feelings, situations to him every night using books, and although he doesn't always answer my questions he is DEFINATELY taking in all of that information!.

My son is obsessed with Dr Who (was Freddie Mercury before and that pops back up from time to time) and drawing pictures at the moment, but these change all the time!,

The Specialists at Great Ormand Street (Where he was diagnosed) say that if he carries on the way he is that he will totally be able to deal with most things that 'Typical' Aspergers children find difficult, so this is encouraging, and proves that with understanding and support it CAN be done!,

I am very open with my son, he knows when he is 'flapping' or 'zoning out' or 'going to planet 51' as he calls it, and I will always tell him and others why he has the problems that he does, we are not ashamed and are 100% proud of our amazing son!,

Good Luck with your long journey, I hope you find sucess in finding a diagnosis for your son!,

Shaz x

[city_gurl]

I have a 5 yr old son who I thought to be on the autism spectrum(aspergers) I have been to numerous doc.s n psychs to have him evaluated ( we started at age 2.....due to his hellacious temper) never have been told what was wrong just that there was def. Something goin on and. He was too young to diagnose. Anyway...we have a new behaviorial counselor lined up this week and she will evaluate him. I have taken aq tests on line and 36 was the outcome.....32 or higher is what determines if they are on the autism spectrum.....I know in my gut feeling as his mom that something has not been right all these years I just want to know how to help our situation and my son. I feel with the proper tools he and the family will function more smoothly on a day to day basis.
He loves to count numbers and loves to make airplanes n helicopters be it paper or lego's. He is intelligent in school but lacks social skills...he gets bullied and picked on. His teacher tells me he is ahead of the class in a lot of things.......he cannot sit still or concentrate ( mayb a.d.d.) he doesn't like to make eye contact hardly and if he does he looks away quickly or rolls his eyes as if he is looking over glasses.....he can tell you about trains and race cars.....he is very literal and has major melt dons when things go awry or do not make him happy. We have potty issues and he is a finicky eater....he is rude and mean without remorse for what has been done.
He is a wonderful child all that aside and I just want to know if he does in fact have aspergers or is on the spectrum...I could go on and on about all the red flags.
I fought w/ my husband and his fam many times about his issues...and finally my husband is letting me get him evaluated...again...he is very much in denial and just wants me to shut up and be done w/ it.
Anyway I am a distrought parent who sees all the signs and I just want to help my son cope better and be happier. If anyone has any advice ..please feel free to offer........