Consequences of Autism diagnosis?

Family, Education, Health and Pets
1
What are the consequences of an autism diagnosis in Switzerland? We've been told that our son might be borderline and have to decide if we want to request a formal diagnosis or not. He is 4 and Swiss so he will be going through the Swiss school system.

I'm reluctant to push for one at the moment because I think having to visit doctors etc would only distress him unnecessarily. I'm also not fully trusting the psychologist who assessed him (she insisted on assessing him in his third language so we don't know if he didn't understand what she was asking, understood but couldn't do it, didn't want to cooperate). They want us to keep him out of kindergarten for a year but have given us no alternative other than I keep taking him to playgroups. He would be bored senseless and miss out on the best place he could be to learn to socialise in an appropriate way with other children his age. He is very sociable and loves being with other children so it doesn't seem to make sense to keep him back.

I'd like to know what effect a diagnosis would have on education etc for him for the future and if there is any benefit in actually having a diagnosis. My husband thinks that it is unnecessary at this stage and we shouldn't create a paper trail that might label him before he starts in the school system. Would it also affect him being able to get additional health insurance in the future? Does anyone have any experience or advice?

Also what would happen if, against the doctors recommendation, we refuse to get a diagnosis and send him to kg anyway?

2
You should get in touch with member ecb on the forum. She has a lot experience and is very knowledgable about the processes in place in Switzerland for assessing autism.

3
If he was born in Switzerland or has Swiss citizenship then he will be entitled to some level of disability insurance (IV) and he needs the label/assessment for that.

I would get a second opinion with someone who can assess him in his mother tongue. How did you find this psychologist? Did you get a referral from your paediatrician?

My understanding is that a psychologist can assess, but you need a paediatric psychiatrist to make the formal diagnosis. We have just gone through an assessment process with the school psychologist, Kjpd (kinder-jugend-psychiatrischer-dienst) and have therapy provided by the kinder-jugend-family psychologist unit of the unispital Zurich.

There is a very specialized autism specialist, dr gundelfinger, at the Kjpd in Zurich, if you are in Zurich I would recommend you ask your paediatrician to refer you to him, especially in 'borderline" or unusual cases.

Who is suggesting you delay entry to kindergarten? Are they authorized to make this suggestion? What did you specifically ask them?

As for assessing in non-mother-tongue, this is a big "no-no" in professional terms, although it might be a compromise, it is inadequate. All specialists will tell you that it is not ideal. What is his mother tongue?

As for the issue of,labels etc, if his behaviour is unusual enough for you to already seek professionals advice, and be worried, then the kindergarten teacher will quite likely spot him a mile off! A friend of ours just arrived from the UK and started school on Monday, was placed into language integration and by Thursday the parents had already been booked for an appointment with the teacher to discuss his developmental issues...

Regardless of labels or diagnosis, your child's teacher will have to work with your child 'as himself'. Even with a label, autism is a spectrum disorder, every child is unique and it will absolutely come down to the teacher-child-parent relationship.

From the bottom of my heart (and speaking from personal experience), denial, sweeping it under the carpet, avoidance or hoping it might just go away, is not helpful...there is a lot that can be done with really positive early intervention, and I have to say that our experience thus far is that the school system does have some very good strategies in place to meet individual children's needs...

Is he old, middle or young for the cutoff age for kindergarten? Has your child been allocated to a local school yet?

There will be two sides to the argument from the kindergarten, one would be to wait and give him more time to develop. The other would be to Immerse him in the language and social experiences as early as possible. There is the option of doing three years of kindergarten in Zurich, instead of two, and this can be done in consultation with the school teacher and administration.

Hope that helps!

You are welcome to pm me if you want more links or info. If English is the child's mother tongue then it should be possible to get a proper assessment done in English. I can give you a list of resources to try...

4
I am definitely not an expert, but in my opinion is that anything you do that limits his social interactions is counter-productive. I know in the US that my young cousin's teacher wanted him diagnosed ASD and put into a special class where he would have been socially excluded- my aunt and uncle decided against it. ASD comes with social deficits already, so it's really important that a borderline ASD person has lots of structured time to learn social rules, and interactions. So, I would not delay kindergarten, but I might be thinking about keeping a child there an extra year.

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Thank you so much for the replies! I shall get in touch with ecb.

The pediatrician referred us to the centre for child development and we were given an appointment with a psychologist and a neurologist. It is the psychologist who has recommended this, although she did say mainly because she has had to judge his cognitive abilities to be zero because he refused to do any of the tests she asked him to Some of them I know he could do (e.g. the jigsaw puzzles, she gave him three piece ones to do, he did 4 or 5 of them and then refused to do any more. At home he does 45 piece ones by himself, 98 piece ones if he has someone to suggest which pieces he should look for next). Another, he was beginning to lose interest so I suggested she skip to some harder ones but she said he had to do the easy ones first and then he just got up and walked away.

I'm kicking myself that I didn't insist that at least she use his second language, I only thought about it afterwards because he does understand some German although only speaks in odd words.

He is old for the cut off and is on the 99th percentile height and size wise so I really cannot see how it would help him in any way to be held back a year, effectively limiting his contact to children half his age (and size). The school allocation should be coming soon, we were told April. He had excellent feedback from his playgroup this week, he joined in all the activities, spoke to the other children, well behaved etc. The psychologist said she would try to go and observe him there as its the only group he goes to alone, but nothing more has been mentioned.

I think my husband was a bit shocked to see the application form for help goes to the Alters- und Behindertenamt. I'm not denying there is a problem, but I also feel the psychologist has been a bit harsh in her assessment. He loves being with other children so much it seems insane to deprive him of the place where he will be able to meet other children his age. I'm relieved to hear that it would be picked up quickly at school and there would be adequate support. I think this is the way forwards then, leave it until he starts and see what happens.

6
Have to agree with what swisspea said about the kjpd in Zürich. In our case they have been excellent. I would urge that if you think there is a problem and it might be autism then get your son assessed sooner rather than later. Then treatment can begin. Early intervention is really the key to getting your son back on track. Has worked wonders for my daughter, who was diagnosed at age 3.

Try not to think too much about the consequences regarding the school system etc - rather concentrate on getting the right therapies for the benefit of your son.

7
Disclaimer: no autistic child, but 4 children.

At 4 I would really counsel against pushing too hard for an official diagnosis. You are talking about Swiss kindergarten here, where the biggest challenge will be to decide what colour you want to paint today for the next 2 years.

If you get him labelled now, it might cause more problems and I really don't see the benefit of pushing for a diagnosis of a borderline case at this age, as it might just be that he's a slow developer. Heaven knows boys are slower than girls, especially when you factor in the additional language issue.

My hunch would be to consider getting tested back at home (wherever that might be) but not in the CH system (yet) so that he is not labelled incorrectly and held back as a result.

Good luck whatever you do, but do keep in mind that Swiss Kindergarten is not the most challenging environment...

8
OP I can not tell you what is right for you or your child, all I can do is relate my experience of having a child that has borderline Aspergers Syndrome in the Bern education system...

The first thing to note is that it is the policy in Bern to have 'highly functioning autistic" children in the normal classes where at all possible. The second thing to note is that while the Canton will pay for certain additional support for your child, it is only obliged to do so if they are diagnosed with the problem before a certain age, so you might worth checking out how late you can leave it.

In our case our child did not have the diagnoses when they started in KG, although there was no doubt in our minds that there was an issue - it only became evident if you spent a considerable amount of time with him, longer than was taken in most diagnosis sessions. As a result KG was a horrible experience for our child because no allowances were made for his little behaviour issues and so on.

When school time came around, we were luck that we met a school director who was determined to get our son the support he needed, so he pushed and pushed the child development authorities, until they finally agreed to a longer assessment period - the result was confirmation of what we all knew!

That diagnosis made all the difference, because the school director was now able to add a second teacher to the class room, provide social skills training for him, inform the other parents of the situation and provide information to his classmates as to what the issue was and how they could help him.

That was several years ago now and in the mean time he has taken part in every school activity that came up - day trips, overnight trips, ski camps etc... and a big part of that is down to his classmates who look out for him - make sure he did not wander off from the group, that he has taken his meds, that he has sorted himself out for bed etc... Team work and responsibility for the class is a big part of school life here and he definitely benefited from that.

We were very happy with the support we received here, my only regret is that we did not have the official diagnosis from the beginning and our son had two horrible years in KG as a result.

9
You may be interested in a research paper published by Henry Markram on autism (he directs the blue brain project at EPFL, Lausanne).

http://journal.frontiersin.org/Journ...010.00224/full