Misdiagnosed autism?

[zanyzoo]

Hi I've posted in SEN with no response

My son is 5 and has just been diagnosed with autism, using an ADOS screening with OT, SLT and paed. I've always suspected as he is very controlling, intense fears, obsessive and has rituals/routines. He also has quite a few sensory issues and he's being referred by his school to have an Dyspraxia assessment.

I've always encouraged him to do things that put him out of his comfort zone, gently of course and things he'd ultimately enjoy. He used to cry and be a lot more anxious, but we've persevered and he's grown in confidence

This week alone I have dropped him at a new swimming course where he knew no one, he's been to a play date at a friends house who he hasn't been to before and he participated confidently in a group I took him to. He has done so well with all of these things I'm thinking has he been misdiagnosed? Is that even possible?

@Allfednonedead thank you! That is a wonderfully supportive post, as are so many on here, overwhelmed with the support I've been shown! Thank you!! It's a scary road. I have suspected for a long time that I may be somewhere on that spectrum, but anyone who knows me would say that's ridiculous because of how 'naturally' I socialise.....! I have a lot of fixations and obsess about finding safe patterns in numbers.. just to name a couple. A lot of sensory issues too.

I just hope I can get him the support he needs ❤️ which I know is limited with the nhs funding!

@zzzzz it is sooo confusing isn't it, what a minefield. I wish we could do some computer testing in theirs heads to get a definite!

Thank you @Itscoldouthere yes he's definitely on board and accepted it quicker than I did, which is odd as I'm the one who's said there's something from very early on and he's always said nooo he's fine, but it has become more obvious since starting school. His school are flabbergasted by the diagnosis, but I honestly don't think they have much understanding on it!

Zanyzoo glad to hear you have support from your partner.
My DS was just a bit odd in nursery and reception we didn’t really start to have problems till Yr1 and then school got really tricky. School was on board thankfully but I had to fight the local authority to get the support he needed, by the time he left primary he was doing really well.
When he was young things like sharing a desk became difficult, also having to stand in line was hard, luckily he was given his own space and if things were getting too much they would take him outside in the playground for a run around, it all really helped.
I had to accept he wasn’t the most popular child, but he did have friends, he certainly didn’t get invited to all the parties, you just have to get tough skinned about that!
I had to stop working to support him, but used it to my advantage and became involved with the PTA and raising money for the school, it really helped as I had friends who weren’t parents in his class so when things were difficult I still had support from my friends.
Now he’s a teenager I find him a most interesting young man, he’s got a great sense of humour and is very kind and considerate, he’s a gamer which is often quite common, I was initially worried about his gaming but actually now I see the positives of it, as he has some great friends through gaming.
Anyway this isn’t about me or my DS but I hope it helps you a bit to know it can all be fine in the long run, I love my DS so much and although it was hard at times when he was young I really wouldn’t want to change him in any way.

zanyzoo did you get the narrative report from the ADOS? I found that so helpful to see what the assessing team saw from the activities she did. Perhaps if you do have it, you can read those comments and it will help.

DD2 can seem very happy when she's doing an activity. In fact the more nervous she is, the happier she seems. It causes huge problems for her.

I’ve been there, my son was diagnosed last year at 3 and at first it’s almost wanting them to be wrong for fear of the future.

You sound as if you are doing great.

I don't think he was misdiagnosed I just think that you've done a great job, with gentle encouragement, helping him to adapt .
The tests are very in-depth and I suppose there is some room for error, but your ds obviously met the criteria for asd and had a lot of traits that need intervention/ help/ support.
Tony Attwood said that children with asd can improve with early intervention and may not necessarily meet the criteria if reassessed when older , but would still have asd .
My d's was diagnosed at aged 9years old. He's had a lot of help since then with conversation skills, life skills, anxiety management, dealing with emotions, empathy.
He's 14 now and I ( most days) can not see his asd. He has come on leaps and bounds !!! Then something will happen, or he'll say/ do something and I'll think ...that's a real asd thing.
He still needs support/ guidance around emotions and social interaction but he's doing so much better than I could have imagined this time 5 years ago.

Zanyzoo, our school were surprised by d's diagnosis too. They were the ones who started the process , thinking it was just a language delay.....but 3 years later after going around I circles , he was diagnosed.
The school were very surprised, but autism is such a spectrum , that many don't understand if the child is higher functioning.
Best of luck, read and research as much as you can.
Asiam , ( as I am) is an Irish organisation online, but had some very good print outs and guidelines on their website.
Tony Attwood book ( the complete guide to aspergers) I found very informative also

@Itscoldouthere I really appreciate your insight and to hear such positive stories. I know that I am incredibly lucky (seems odd using that word) to have a diagnosis so young, so we can try to get the support in place. The school 'do not' see his difficulties (refusing to acknowledge) but they are there and as you say they will get worse as the demands of school get higher, also as the other children mature, many of the boys in his class display the exact same behaviours as him at the moment, a lot of his struggles are internalised, people don't see his struggles but I know they are there. I hope I can get him the support he needs! I too would worry about gaming but just have to retrain my mind about that if the time comes.

@Lougle yes I will have a reread, thank you, I was a bit overwhelmed to begin with so not sure I took it all in!

@Thankfuckitsfriday1 thank you!!! And I bet you're glad of the day today 😉

@Designerenvy thank you so much for this!! I guess that's my worry, I was thinking surely if he is autistic he wouldn't be magically improving in these situations, but what you say makes sense, it is such a spectrum and my very limited experience of autism has been of very severe ends of that spectrum! My family also refuse to believe there is any kind of issue, which doesn't help, family and school not believing it!

I do believe it's possible for a child to be wrongly diagnosed, perhaps more so privately and with a parent who has read a lot about ASD. I certainly don't think it would be common though.

What strikes me about your examples is that in at least two cases you dropped your DS off and picked him up at the end. My DS is 4 and when I do likewise, I will always have good reports from him and the adults caring from him. If I were to hover and watch from a distance, I would see plenty of jumping, flapping, loss of focus etc which goes under the radar of teachers/other parents (or they just don't comment on it). He also functions well in group activities which are directed and controlled by an adult (eg football class). However watching him around other children during free play, the differences are obvious.

Personally I tend to slide into denial over and over again, because in many ways he functions so well. But then every once in a while it becomes undeniable, and I suspect this will happen more and more often as he gets older.

My son has Aspergers, diagnosed aged 4. I was diagnosed in my 40’s. Masking was a way of fitting in and also, being able to enjoy situations, up to a point. But it’s exhausting and requires a quiet day next day, and for my son (who’s now 18) a massive catch up on sleep.

It’s unlikely your son’s been misdiagnosed. I’m sure it does happen but rarely. He’s so little and you want him to build confidence and have the ability to live his life but one thing I have learned over the years, is that forcing a round peg into a square hole just makes that peg feel that they’re ever failing/letting others down and it ends up an odd shape.

@Tawdrylocalbrouhaha this is very true, especially true of his school who say he doesn't present at all at school, however I know he does because in the next breath they are telling me things he's done that I've told them I'm concerned about!

@MissKittyBeaudelais how did you get diagnosed as an adult? I've looked into assessments and it seems non existent! I would like to be assessed!

Square peg round hole is exactly what's going on with his school!

My dd 11 was diagnosed with Autism at 6, she has learning difficulties and goes to a special school. I have always encouraged dd out of her comfort zone from a very early age, so she has different mainstream experiences and she is involved in activities that her neurotypical peers might be: dancing, Brownies, trampolining, youth club, choir. It has really helped her confidence and interpersonal skills. A new mainstream youth club started, and she was eager to join, so I dropped her off, stayed for 10 mins and went. They had my number and contact details in case anything happened, but when I collected dd, she was buzzing, and was really good they said.

I would have hated that happen to me at that age as I was really shy and not confident, but dd really enjoyed it.

Sorry OP, that wasn’t very helpful was it?

What I’m trying to say is, my family and some friends always felt DS was not on the spectrum but over time and with education they can see many of the traits and now accept both his (and my) condition. When I was a little girl a neughbour’s autistic son was non verbal and had scary (to me) stimming habits. I thought THAT was autism. But it’s a vast spectrum. HUGE. And people who can’t or won’t believe a diagnosis are not helpful to you or your DS. I’d be particularly concerned about the school’s skepticism. Your son will need help beyond the usual classroom help (possibly) so they need to be in board. At age 5-11, school is/was “doable” for DS but secondary was tougher because that’s the time the “differences” often start to show.

@Zanyzoo....I will come back later and explain but I have to walk a golden retriever now, who’s pacing about the kitchen with a ball in her mouth 😁

@Aeroflotgirl I would most certainly not have done that as a child either, my son never ceases to amaze me! He really is wonderful and achieves so much! Thank you for that insight :-)

My dh I suspect has Autism, he has many Autistic traits, and can appear outwardly social, to look at him, you would never tell, he has a good job, drives a car, and is very academic, but little traits make you think. When we have guests he goes upstairs away from them, I have to remind him to go down and greet them and try to be sociable, he gets very anxious driving in new places and just sticks to the same places and routes that he knows, he cannot process the kids noise and commotion when they are particularly noisy and has to remove himself away.

@MissKittyBeaudelais oh no it was helpful! Every comment on here has been so helpful. I just feel like I'm banging my head against a brick wall with everyone, not that it matters what they think but definitely from the school point of view he needs a lot more support than he gets. He was punished the other day for hitting a teacher who was trying to move him away from another child..

A teacher was touching him..
He lashed out..
They don't see any signs? Erm....

I was definitely having a funny 5 minutes when I wrote my initial post, I have no doubt in my mind that he's on the spectrum and have suspected since he was a baby. I just felt a fraud dropping him to all these places and like you imagining the children I've seen with very severe autism. I feel awful what some parents have to go through and felt as if I was belittling that. I know I'm being silly, it's just such a lot to take in. It really really helps to hear all of your experiences and about how wonderful all your children are and the things they have achieved. Please keep these coming xx

@Aeroflotgirl that sounds very much like my brother!

Your welcome zanyzoo, dd looks outwardly Autistic, as she stimms, and flaps,but she is also very articulate and well spoken. In fact dh is a computer programmer, and bought dd a Kano build your own children's computer for dd for Christmas, which she built herself following the instructions, he is teaching her to write programmes to produce quite technical artwork which she loves. Hopefully dd might do that as a job when she is older. Autism is a big spectrum disorder, and no two kids with Autism are the same, they may share some similar traits.