Have you ever had a wrong diagnosis of autism for your DC?

[tiredmummyoftwo]

DS (4.7) was diagnosed at 2.5 with classic autism. He showed most of the symptoms if not all at that time and thereafter. In fact, not until recently we had any reason to doubt the diagnosis although it was clear to us at the time of diagnosis that it was not classic autism, if anything it was HFA. Recently since DS turned 4, things have taken a dramatic turn. His speech progressed to the level of a 3.6 years old from 18 months in the space of couple of months. Suddenly from last week he is able to answer questions about the past. He has suddenly become social, behaviour changed, eating everything for the last 6/7 months (he only used to eat yogurt). He still have speech delay and he is still behind from his peers. In the last 2 months, his ABA therapist changed his programme 5 times as he was suddenly gettiing all the concepts in one go. Now the people involved with him (all the professionals plus school) saying-it's speech delay, not autism. Has any of you experienced this? Have your DC suddenly recovered from autism?

I know this is such an old thread but it has given me a completely different insight into autism. We are currently starting our journey with our DD who we suspect has Autism. Currently under SALT. DD is 19 months and I am ripping my hair out trying to help her the best I can in all the areas she is struggling with. I am scared I am not up to the job but really trying my best but some days I just feel useless as she is so frustrated with life at the moment. She is not walking, talking, making eye contact, waving or pointing. I just feel hopeless, but thankfully there is light at the end of the tunnel judging by this thread.

My DS3 has been diagnosed with Mild Autism.

On the day of assessment psychologist and Speech therapist found it really difficult to come to a conclusion to give him a diagnostic apparently my DS was really tricky, sometime he was making eye contacts and sometime he is not. So they decided to visit his childcare and observe him there. Today I have received a letter in mail stating he is autistic. Apparently he was most of time by himself and he did play and communicate with educator (adults)there. Because he said bye to they few times repeatedly they think he has echolalia, however I have hardly heard him abnormally repeating anything, unless he want something to eat or he want us to show something or need attention and that is not frequently. DS never had any major meltdown, he is very social, happy kid, always wanting to play with other kids and adults. My husband was in denial from start and said there is nothing wrong with him and it’s just a delay in speech, however due to his speech delay I took the path for him to get assessed. However he have changed a lot from 2 years to 3 years in terms of speech. He is not there yet as compare to 3 years old speech ability. He has started making sentences with 3 words. He is very social, understands emotions, point at things if he can’t communicate or say it. However the way assessor have explained due to echolalia and playing by himself make them believe he is mild autistic. I come from multilingual background, we speak hindi and English at home I believe and that’s why I believe he is having hard time communicating with his friends in childcare. Is there anyone else having same issue and not satisfied with the assessment results or not satisfied with the reason given to them.

DS was 3.5 when the teacher suggested speech therapy as he wasn’t talking clearly and not much good in role play activities. later we missed a session and was discharged as by that time he was like a normal kid , may be more . After a year later another therapist saw him at the class and referred for assessment . 6 months after that based on their 1 year observation , basic questionnaire from us and a telephone conversation with a fairly new class teacher ( not the one who originally recommended) , they suggested that he meets the criteria of being within the spectrum . We parents don’t think anything like that . He is happy , smart and very friendly with eye contact like a normal kid ( some direct and some indirect ). The only thing is he started speaking a bit late ... around 2.5 to 3 and when he is very excited he flaps his hands and jumps sometimes at home , does not do this much when at school or out.being multilingual he probably hasn’t been able to interact with school friends and teachers as they would expect. We had a meeting and they told us he seems to be within the spectrum and to wait for a letter which we should hand over to school as well . Also we had told them that he was into trains at the time and they assumed that is the only thing he is interested in . He is interested in many things with high interest in trains but also a lot in phones , computers , paw patrol, props pigs , legos , number blocks etc . They basically judged on 3 things : hand flapping , not enough eye contact and apparent not enough participation I role play . We have a huge circle of friends and their kids are very close with DS and all the parents think DS smartest, friendliest and most well behaved of the lot. I don’t know what to say . Iam very worried what to do .

Sorry not 1 year observation , just ONE hour .

Are any of you guys more satisfied with your diagnosis now that this thread has been up awhile??

Also do you guys have multiple children- ones not on the spectrum?

I wasn’t satisfied with autism until I had a NT child and truly saw the differences with things like pretend play social interaction eating habits sensory issues and just the true difference in how they play with others and alone.

I have 4 kids.

2 are autistic and 2 NT.

The 2 autistic are completely different in everything...

I am.not convinced about the diagnosis...

But I dont care about the name...labelll

I.am working.on their strengths to develop them further...and help with their weaknesses...

My daughter is verbal
..but no function speech...i am working on that...

My son.is worrying me...non.verbal...no babbling...no.word

really worried

He has loads of repetetive sensory tedious play

Hi everyone, just reading through this thread which is interesting. So glad to hear so many of your children are doing well.

I have concerns about my 7 month old. Although he is very young, he is displaying quite a lot of symptoms across the board. He is delayed with all milestones (not rolling over just flops to one side, difficulty holding toys, difficulties weaning he gags a lot, doesn’t hold his head up for very long during tummy time) he was socially smiling 3-4 months (although only occasionally) but has not smiled since 4 months.

Looking back was there anything you noticed about your children when they were babies? I’m not looking for a diagnosis I just want to talk to people who may have experienced this with their children at a young age.

I’m so worried and any help and advice would be really appreciated. Xx

@Bettiebooboo how is your daughter doing now?

@Bpr187hiwz your little guy doing now? My guy is 26 months now and I have concerns and I did from very early on like you.

In case others come across this old thread, please can I offer a word of caution about ABA, the idea of mild autism, and people being cured??! I know its often a shock when autism is first suggested and parents worry, but ABA is very firmly seen in the adult autistic community as very harmful. You're not 'curing' autism, you're using damaging methods to train your child how to act more like a neurotypical person just to please you and society. So yes, it looks like your child mo longer has those stims or food issues or repetitive play or other traits. But they're often just masking them, pushing them down within themselves, which can lead to intense trauma reactions later in life. I'm not against all interventions (my DS does lego therapy, play therapy, social skills group etc) but none of what he does involves training him to act like something he isn't just to please others.
Autism is a pervasive neurological condition. It is hard to get a diagnosis. It is not often wrong. There is also nothing wrong about being autistic. My DS is totally fabulous. Yes he has his challenges and we as a family have to make lots of adaptations. But no way would I change who he is. As he's got older, his personality is really shining through, the quirky jokes he makes and how serious he can be with timekeeping.
Anyway sorry, rant over. I would just never want people to find this thread in the future and not also read a more critical stance to ABA.

Well said Magrat, I totally agree.

I can't agree with your insight Magrat.
I have a DS who is autistic and a DD likely ND too. It's their greater interest to integrate to society. Because we, their parents and broader family can say we make voluntary adaptations but the world won't if we are using DX as an excuse. Because everyone thinks like "I have my own struggles too". Noone cares about excuses. If our DCs are blessed enough to be able to mask they got a chance.
I also have struggles with social situations I am trying hard to manage it and I know noone would care if it would be called a syndrome - or worse I would be treated like a fool. Depression and anxiety can be treated. In the other side you get the loneliness the isolation the stigma I would find worse. I am not autistic (never cared) but I am masking as I can and I know how devastating it can be. But it's my only way to be accepted.
And its only a question in HFA, the severe end no doubt needs to be taugth to interact for a normal family life. And I would definitely cure their autism and would every parent with a severe autism.
My children are under 3 so I can be wrong with my opinion. Autism is just a very wide label, and it makes sometimes difficult to understand each other's insights.
We can have different ways to accept or to treat ASD. And both way can be good for different reasons.
Sorry if I sounded rude, but I want to believe my DC 's worst scenario would be haveing a personality like me.

I didn't say I don't agree with any interventions. My DS attends special school and has play therapy, ot input, slt, conversation group, bucket game, lego therapy, emotional regulation therapy, sensory circuits etc. What I'm saying is doecifically about aba. I agree with you that life will be easier for him to navigate if he has a toolkit of ways to cope with a predominantly NT world.
However (and it's a big however!), ABA trains children to suppress their autistic traits, to push them down, to act more 'normal'. I would strongly encourage you to talk to ND adults about the lasting trauma ABA can bring. Learning how to make small talk at a party is not masking, that's what we're all teaching our kids. Masking is feeling like you cannot be yourself at all, that you have to.invent a version of yourself that other people find more 'normal' so that you can fit in. That cancause stress and anxiety, eventually leading to a feeling of not really know who on earth you are. I speak from experience as I know I have done this for years, usually using alcohol to help me be what I think is more neurtypical in social situations. I'm only now unpicking the issues and bring more authentically me.
Yes, I want my DS to have friends now and as an adult, but if they only like an odd warped version of him which isn't Reay who he is then 3hat kind of friends are these anyway? Why does it matter if he's very literal? Employers are obliged to make reasonable adjustments.
At 3, I could have imagined my DS 'outgrowing' his satisfaction. He is high functioning, although I hate that word because he is only high functioning with an incredible layer of support underneath, and even professionals don't use that term anymore. At just over 6, my DS is more obviously autistic, more in mindset and how he interacts, qnd would not take very kindly to being told he's not totally perfect as he is! E.g. if I mix his food, he won't watch it. No amount of anything is changing that, I'd just get a very unhappy child. And so what if he's still like it as an adult?? Why does it matter? If he goes to prezzo, he'll just order pizza not spag bol!
Anyway, I don't want to rant qt you, and I'm sure you have your child's best interests at heart. I would just caution you to do some research, talk to autistic adults or follow them on twitter etc, and enjoy the uniqueness of your child.

Also, you can't cure autism. It is how your brain is wired.

Ha autism, not satisfaction! Oops!

Wishing you could take away autism is one thing. The reality is that you can't take it away. Can you teach your child to be more NT? Possibly, but at what cost? I have not seen one single autistic person describe masking as a blessing, they feel it is a necessity but comes at a great emotional expense. And I agree, it's not the same as trying to hide a bit of social anxiety, it's far more than that.

Anyway, it's good to have differing opinions offered on threads such as this. If a parent does their research and decides that ABA is in their child's interest then that is their choice, but they should at least go in with their eyes open.

It's incredibly upsetting to realise that your child is developing differently and we hear so much about early intervention being so important. There are many ways to work with your child to support them and teach them new skills, ABA is not the only way.

@MagratLancre
I see your point of view now.
I think our opinion is pretty similar after all. I think I was only a little sensitive to the part you wrote about masking, and I may have seen a little bit of what's not there.

Thank you both for makeing it clear. Xx

I'm wondering whether the opinion of adult aspies reflects that of the majority of spectrum. I read some extreme opinions on Quora that's why I took a step back.

(Btw we don't attend ABA :) we don't even have access to it here)

Possibly the opinion of aspie adults is more representative of autistics with higher support needs than that of most NT adults. There are plenty of verbal autistic adults who were non verbal as children and had challenging behaviours and often anxiety is what underpins their difficulties. Have you read The reason I jump?

Rorla your dc are young and I understand how overwhelming the worry is. Time helps and gives more understanding of your child and what does or doesn’t work for them, what will help them thrive, not as a NT but as the best version of themselves.