New Zealand mother with 6yr old boy misdiagnosed

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Hi I,m new to this and getting desperate for some guidance/advice. Child mental health services here in NZ are inadequate and underfunded. There is little choice in who you can see privately. Our 6yr old boy was invited to be assessed after being present for 5 mins in a family asstmt for our older daughter for something completely different. He was only there 5 mins cos he couldnt cope with the situation. Since May he has been seen a further two times, with a suspicion of Aspergers. Most recently he was assessed in a playroom situation for 40 mins by a Psychologist with the rest of the multidis team behind a one way mirror. He apparently was very appropriate except for the initial settling in period when I had to leave him. They are now saying they dont think he is on the spectrum. We are really confused now, his school is concerned, family and friends also thought he would receive this diagnosis. Now they are saying anxiety with sensory issues. He displays most of the characteristics common in Aspergers, usually eye contact and social engagement is difficult for him, I do know it is worse when there is more than one person around him. I an now totally confused? Why did he present this way in the assessment.?

Doris, first let me say welcome to WP. It took the professionals here in the U.S. almost 5 years to diagnose our son. I am not familiar with your Mental Health Care system in New Zealand, but there are people on this site from NZ who may be able to help you, stick around.

As for why he presented as he did at his assessment, wish I knew. There are times when Z appears to be an ordinary NT child, most often in unfamiliar situations and with new people, and usually only briefly until he feels comfortable. One thing I have learned from Z is that while he often is very structured he is almost always unpredictable.

Confused? All part of being the parent of an Aspie. good luck, and don't give up.

I hope I do this write. Never did this before.
Doris50 your not alone. My daugter has been seeing doctors and counslers for 5 years. None of them figured it out. It was just this spring that a counsler saw my daughter in the waiting room and said I think she has Aspergers. At least now we know but the answer came just before her High School Graduation. We have had her tested and yes she has AS. Now I realize that I also have AS. And it only took 45 years to figure that out. I thought I just had the worst case of PMS (PMDD) that lasted forever.
Blessings to you,
From the State of IOWA

I guess I need to learn more about writting on this web site. I didn't realize my daughter used my computer. I see she used Johnny Dep's picture. So I guess I used her sign on information.
From the State of Iowa

Thanks both of you and Marie was this your first time also. Never mind about the photo could have been worse. I managed to get a bit further with things. Found an Occupational Therapist to do a sensory/motor etc assmt on James in a few weeks and she actually communicates with parents as she does it. It will cost cos its private but will be worth it. She used to work for the public system and acknowledges that it is useless. Right now my son actually has a friend here for a sleepover and it is going well. Its times like this I also question whether he has Aspergers. Hes interacting well with his friend with great eye contact and pretty reasonable social skills if not a little bossy. I seem to sway in my thoughts about him just has his behaviour is so changeable. But then tomorrow I'll probably change my mind again. Its all so confusing. Is it possible to be on the Spectrum but not have all traits or have them mildly?

Doris, glad to hear that you are making progress. Until you get a firm dx for your son you can expect your thoughts to be confused (and after as well). Yes is possible to be on the spectrum and not have all traits or have them in varying degrees. Remember, Aspies are people, and as such the the variety is infinite. There are times when Z appears to be an exceptionally bright NT 10 year old, other times when his "differences" are painfully apparent. All part and parcel of living with an Aspie. Makes life interesting, and I do hate boredom.

You are embarking on a marvelous journey with him, expect the unexpected. Smooth roads, bumpy roads, dead ends, u-turns, progress and reversals are all going to be found on this journey. Remember there are people here who have gone where you are going and others will follow you. Visit WP often for directions and you will find that you will be able to help guide tne new traveller.

Talk to you later.

There is a doctor in Christchurch who has aspergers herself. She maybe to help you. Her fees are minimal. PM me if you wish.

Hi,
Your account of your assessment sounds exactly like me a year ago at Waikato. Our 6-year-old boy performed admirably on all accounts and we were told "definitely no autism/aspergers", so stop reading about it and worrying, and that it wasn't worth them doing a school visit because they were convinced there was no problem. The problems continued and within a few months I "insisted" that they do a school visit assessment because teachers were still concerned. They did school assessment and bascially made an immediate Asperger's diagnosis, and even said that our situation was making them review their whole procedure for assessment. My theory is that the Asperger's doesn't present in the hospital assessment because it does not take into account the SOCIAL ENVIRONMENT of the child, which is the biggest factor to do with the condition, whereas the school environment does. So if I were you, I would badger them to do a school observation and see things as they really are. All the best.

Doris50, yeah your not alone, in california, i wasnt diagnosed till i was 26 yrs old. 27 now. i was first diagnosed with anxiety disorder,ptsd and somatization. now it's aspergers..

Thanks everyone. I havnt posted anything in a while as just feeling so frustrated. Well we got a diagnosis, definitely NOT on the Spectrum. Apparently its just sensory issues[yet to be formerly assessed which I am going private for], anxiety and get this hes a bit shy. They explained absolutely everything with these diagnoses. When I said I would go private they attempted to put me off saying the specialist I have chosen would give anyone a diagnosis because she is self diagnosed. But I have heard 1st hand that she is very good and this is not the case. My husband who has been supportive all the way through thinks I should just leave things for a while because he thinks I,m becoming obsessed, probably not far from the truth. Family and friends are like'Oh well thats good isnt it' even though they initially felt the same way. It feels like I have very little support now and everybody just wants me to shut up. So where to from here, do I wait a while and let time tell or do I follow my gut instant and act now. I'm so confused and feel really alone and disempowered through this whole experience. So is it really common behaviour for NTs to slap ther heads and jump around waving their arms in crowded places amongst other things?

Hi Doris,
Sorry to read that you're feeling so frustrated about the whole thing. My issues are often like a rollercoaster ride - things start seeming to be getting better, and then they get worse.
I would say go with your gut instinct and do your best to research everything you can so that you get an accurate diagnosis ASAP. Then at least you can start working with what you know, rather than playing guessing games for the next how-ever-many years.
Have you visited the Autism centre in Columbo street (can't remember exact name)? It has quite a helpful library and a couple of staff who may be able to help. They have a book by Tony Attwood - think it's just called straight out "Asperger's Syndrome", which I found really helpful in clarifying my child's diagnosis.
All the best.

oh yeah Doris50, if you can try to get a IEP or special educational report. or whatever they have for your child. usually the background information will lead to aspergers after his school years. then you can usually get some kind of support hopefully. for me it's social security disability for america. thats how it was for me after 3 years of working after school, and melt downs finally i got the support i needed.