Misdiagnosis of Autism for son at 2 years

[FP - Father]

At 2 years 1 month, our son was diagnosed by a paediatrician as autistic, primarily on the basis of poor eye contact and limited language skills. The test given was conducted in a manner that made him uncomfortable and the doctor refused to accept any statement we made, saying “if he cannot do it for me, then I cannot assume he has the ability”.

Somewhat unwisely, we took this diagnosis seriously and we tried to start appropriate training to deal with it. At the same time, we had serious doubts since his language skills were developing and we found he had strong eye contact skills when he wanted and was exceptionally warm and sensitive.

Given the diagnosis, other healthcare professionals took it as given that he was autistic and operated on that basis.

After one year we took him separately to two childhood experts in autism- without mentioning the previous diagnosis – and both were adamant that he was far from autistic. In fact he is an incredibly sensitive and aware little boy.

However, in the meantime, he had become very anxious about all the tests and special treatment he had been subjected to by professionals. Since the new positive diagnoses, he is quickly pushing ahead but maintains a good degree of nervousness about health professionals and tests and exhibits a strong lack of self-confidence.

We are wondering if anyone has heard of similar experiences and has seen any information about the side-effects of misdiagnosis of autism. We want to find out how we can be most supportive towards him and what can be done to get him to move him past this experience and gain confidence.

[Monsterlove]

I am a special education teacher. It would be really difficult to diagnose a 2 year old with autism. I would want to rule out other conditions and wait and see before placing a label on him like that. Phoey on that doctor. You have two other specialists who say the child is not. What I want to tell you to do it to have his hearing evaluated with a dopler device and see the results. I would also take him to an opthalmologist and have his vision evaluated. What he truly needs is speech services and they will be provided free of charge by your local school district under "child find". He may have a hearing impairment, too, so the school or another doctor can check his hearing. I would not mention any former diagnosis of autism, however...wait and see.. The school will conduct a speech evaluation and depending if he is three yet, provide pre-school or speech lessons free for you. Tell them about his low self confidence and they may do fun things in art with him, or work on building his self-esteem. The child may also be picking up on your anxiety, so you need to be careful when meeting the speech teacher and make it an upbeat, fun thing for him...doing something fun afterwards, too.

[FP - Father]

Monsterlove,

Thank you so much for your reply - we have already tested hearing: not a problem. He has received speech therapy and he is now quite vocal -although drowned out by his twin sister. I agree that he may have picked up on our anxiety - he has also picked up that he has received more tests and special help than his sister.

He is approaching 4 and blossoming at pre-school in many ways but he appears to have a deep seated disbelief in his own abilities - he does not believe he can do things, even if we know he can do it.

We have deliberately stopped specialised treatment since this was increasing his anxiety and are using preschool and other non-specialised activities to encourage him. (one of the clues for us about the error of diagnosis was that no staff member at pre-school ever flagged he was not a normal little boy - even when we explicitly inquired).

We also found that, although he has good eyesight, visual teaching methods work very poorly with him and discouraged if anything. We tried visual signcards for toilet training - when we stopped and starting using words and encouragement and let him use his own approach, he almost immediately used the toilet and sinvce then has had no problems with it at all. The fact that so much of the special help he received focussed on visual methods seemed to be one way he was negatively affected.

If it were not for his anxiety and lack of confidence that started very abruptly after his misdiagnosis, we would not be concerned but we are trying to find how to undo the impacts, be it from our anxiety or a focus on techniques that made him feel inferior in some way - as I said he is, as we have found, higly sensitive and now that he is talking. he often says things that show that he feels badly about special treatment.

I know that I must focus on showing him respect and very clearly indicating my (genuine) belief in his capabilities - but I am finding it hard to break through the circle of negativity that he is assuming. So our questions are:

• What else can we do?
• What have other people experienced?

[Irene S.]

Hi. We also have twins, and one of the boys started at two years old to have the same problems of your son. We trusted the pediatrician who told us that his hearing was fine, but we made the mistake in believing that he had received a proper hearing test. Instead, he was given only a routine test at the office. When our son turned five, he was finally given, under our insistence, a complete audiology test that revealed his problems with on-off loss of hearing. I hope your son received this same complete test. Also, was your wife given through the pregnancy any drugs such as terbutaline, magnesium sulphate or beta metasone? We believe through our own research that some of these drugs caused both our sons some cognitive and language problems. One of out twins was effected less than the others, maybe due to the fact that he weighed more at birth. We also had to fight against the school unofficial "autism" label they placed on our son. Only after we requested an independent evaluation by a diagnostic center specialized in autism spectrum disorder, we finally could prove to the school that our son had no autism. We know everything about the anxiety of your son and of you as a family, and of the continuous worries us parents go through because of that. If I can suggest something, try to concentrate on the positive, and do not dwell too much on the past negative experiences. Our son is ten years old now. He is passing fourth grade without major problems, but he does need and receive language therapy through the school, without which his anxiety would be at least doubled. He has made many friends and he is a happy little boy. Many good wishes to your little boy and your family. Hope my sharing of our experience might help somehow.

Irene

[FP - Father]

Irene, thank you so much for sharing your experiences. Although we have onl shared less than 4 years with our twins, we alrady have experiebced the "continuous worries us parents go through" and I have a horrible feeling these worries aren't going to end any time soon.

I sympathise so much with your comments on the "autism label" - the paediatrician wanted to notify our preschool/school to alert them of our son's problem and we have resisted furiously. The preschool says he is coping very well and the only area they high-lighted for development was his turn-taking/sharing was sometimes weak. No mention of autism!

My wife didn't have any of the drugs you mentioned and the twins were almost full term (37 weeks).

We are pretty confident of his hearing - the testing was quite thorough - he has mastered selective hearing very well - e.g. we say "put on your shoes" and he ignores and then we say "put on your shoes if you want to play", he puts on his shoes immediately. We are also not so worried about his expressive language which is now moving ahead - even if it is behind his sister.

We are focusing on the positives and are about to take the twins on a short holiday with a goal to increasing his confidence to cope with new environments. But it is his ongoing anxiety and lack of self-confidence that keeps us trying to find how to move him into respecting himself half as much as we do.

[Monsterlove]

I second the hearing evaluation. They may have just done a screening, which won't catch a lot of problems with todlers. However, at 4 those screenings can be a bit more accurate. You also have given me another reason to want him to see an ophthalmologist, too, with his dis-interest in visuals.
Your doctor would have violated your privacy rights that they notify you about if he discussed your child's condition with the school without your permission. He can't do that. He can give you a copy of his evaluation, but it's against the law to call a school and tell them that information. Wow...dumb doctor. Also, schools cannot give out the autism label; it has to come from a doctor. The team could agree to the label, however, but most want that medical statement and will go for other categories.
For now, you might want to join some type of parent support group, but not for autistic kids, something more normal for parent-school support. The child is still very young and you can give all kinds of sub conscious messages . I always find arts and crafts one way to boost a child's image...even dance class works. Helping mom make cookies or cakes also encourages confidence building. A one on one with dad, since he is a twin, is an excellence source of confidence building...like take him out on a boy's day once or twice a month...a Disney movie or something fun...just the two of you that the other twin doesn't get to do...what about a paddle boat or horse back riding with him sitting in the saddle with you (if you can ride)...just a bunch of fun things for a dad to do alone with his son..

[Providence]

I would seriously recommend checking into food and food additive sensitivities , not with the needle testing, but with blood testing and cover the entire spectrum. I think it would be worth your time and money in the long run and your child will be happier and so will you. Good luck.

[Oriana]

From what info you've given, it sounds like your son is healthy and is suffering from no medical problems as far as you can tell, and that this misdiagnoses of autism was the result of him being made uncomfortable during the testing. Unless you notice signs of a problem, I don't see any reason to put him through any extra medical testing now.

As for the self-confidence issues, I'd recommend you try and find something that he is especially good at and encourage him in that area.

You mentioned that he is more of a verbal rather than visual learner, so chances are that, under the right circumstances, he could pick up on reading faster than average.
If you aren't doing it already, make it a habit to curl up on the couch with the twins and a good book just before bedtime each night. There doesn't necessarily have to be a set goal, just let it be a fun activity for the whole family to get in on and enjoy. Let the twins see the words while you read so that they can spot the relationship between what you say and what's on the page, and see where it goes from there. Best case scenario is that he finds a passion in books and gets a head start in areas such as reading, which can lead to a big boost in confidence once they get around to those sorts of things in school. And even if that doesn't happen, it's still time well spent with your kids.

Other than that, you may try to get him active in helping out with light chores around the house (helping mom and dad fold the clean laundry, or set the table for example) and emphasize what a good job he's doing and how much you appreciate his help. Feeling helpful and appreciated can do wonders for self confidence. Of course, depending on how things are normally done around your house, it could be mistaken for a punishment of some kind. I'll leave it to your better judgment to decide whether or not something like this would be helpful.

Ultimately, no one on this or any other forum could know your son better than you do. We can give plenty of suggestions, but that doesn't mean you should be afraid to trust your intuition. Your son is still young. The self image of a boy his age is anything but set in stone. Just be confident, and help him along in the way you think is best.

~Oriana

[mom of2 boys]

FP-father, If you read this....could you please contact me? Unfortunately I too think my son was misdiagnosed with PDDNOS a 'spectum' disorerder at 2 years 1 month. I want to ask you how your son has been doing...plus some other stuff. I got the same brush off.....'if he can't do it for me' ****. Please respond here or email albapant@yahoo.com.

Thanks!

[taniaaust1]

I would like to make one comment on your post in case you dont realise the following....

There are several different forms that most learning takes place. Some are visual learners... others learn better on hearing something and others learn better on actually doing and experiementing. We do most of our learning in one or two of these ways. (the following info came from an occupational therapist my daughter used to see).

Just cause he dont learn well in a set way.. it may not necessarily mean that he has issues.

........

And children do develop at different rates in things. I'd think it would be normal for one child to maybe be a little slower than the other or more timid or outgoing than the other.. as we all have different personalities anyway. Maybe he just needs time to grow and develop.

I dont know if it's just me.. but I find that mine and my friends girls.. all learnt to talk faster than their boys.
.................

If he feels singled out .. take care that your anxiety over the past isnt continuing to single him out for special treatment. If the preschool teachers aint worried about him at all (one would expect them to probably notice if there was an issue).... maybe he just needs people to back off after all he's been throu.