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?

It is really strange reading things I wrote over 8 years ago!

My son is now 12, in Y7 at a mainstream econdary school and doing very well with minimal additional help.

He still has autism and he is very comfortable with the diagnosis.

There are still things he finds difficult - mostly related to executive function and social interaction. Academically he is thriving.

I am so glad we went in hard early with intervention. The ABA program gave him language which then made it so much easier for him to understand what was going on around him. Back then I was probably hoping for a cure, but I have long since come to terms with his diagnosis.

I think it's natural though. When it was first suggested DD was autistic we were handed a leaflet from the NAS which basically said her life was going to be terrible (quoted something like a 16% chance of being in employment). She was still very young and it made me so sad for her, thinking she would always struggle.

Now it's a year on and we are a month away from finding out whether she gets a diagnosis or not, I've learned so much more and the whole thing is much less scary. I think the problem is that it's such a wide spectrum and pathways through it are so varied. Nobody has a crystal ball for any child but that seems even more true of autistic children and as a parent I think it's a rude awakening (most parents probably don't fully appeciate that until the teenage years hit!!). It's funny, I always thought I had no expectations of DD and she could do whatever she wanted in life and I'd be fine with it. However, the thought (having watched the Chris Packham documentary, and even seeing how content he is with life) that she might not want friends was very difficult to take, because friends have been such a source of comfort in my life. I did feel she would be missing out if that was the direction life took her. But that is just as judgemental as deciding your child must be a Doctor or must get married or anything else.

I probably shouldn't admit this but part of me still hopes that next month they might say it's all a mistake - just because life will be easier for her if she doesn't have these challenges.

Anyway, I don't think it's bad for people to hope that their children will outgrow (or learn to manage) some parts of autism. E.g. I can't see why anybody would want their child to be super-sensitive to noise or any other kind of sensory overwhelm - doesn't it just make life harder? But you're right, of course, that the idea of any part of DD's personality changing is horrific! But I don't think that's what people were hoping for - just an easier path for their DC?

Light, you are of course, completely right. Much of this thread is about kids gaining skills and that is great, whether it's speaking or ballet lessons or whatever, autistic or neurotypical.

I think just some of the language is inappropriate. I don't think it's useful or polite to talk about getting rid of the diagnosis as an aim. I don't want my autistic child to grow up and read about parents being hopeful that their kids will stop being autistic.

I'm feeling a bit sore after watching two ted talks that she looked at which, despite being by autistic people, mentioned the idea of a cure. At the word cure she just walked off, stoney faced, and I feel so guilty that I let her hear it. As if she needs curing. She's not sick or broken or second rate.

I know Saturday and I do totally agree. I do get quite offended on my DD's behalf when the experts refer to her speech as "disordered" for example - her speech is fine - it communicates perfectly well! It's just different. And different is not a bad thing. I also take it a bit personally for myself because I have a lot of autistic traits too.

I just have some sympathy for parents getting it wrong, particularly in the early days. E.g. it took me a while to wrap my head around why many people prefer "autistic" to "with autism". I get it now but it took a while. Parents are often handed a diagnosis with no support and just a really negative leaflet or really negative perceptions they already had, so I think it's natural it takes them a while to get to a good place, even if they have an open mind and good intentions.

I do agree with you about "getting rid of diagnosis" or "passing as NT" not being a useful aim. However, being able to survive and thrive in a world that (for better or worse) is built around NT people is a useful skill to build if possible (obviously not at the cost of psychological distress), and will make our children more resilient and less vulnerable, particularly after we are gone. I can't blame parents for wanting that. However, a big part of that has to be being confident in yourself and in your differences, and not just "fitting in with the crowd" (again, whether you are NT or ND!).

My DD recently asked if her diagnosis could be "wrong", and I'm sorry but I laughed. She is fabulous - never any real chance she would end up at SS, she is in mainstream and is getting great grades and coping well. She has friends and a social life. Great.
But ASD - definitely - she is also often in tears, can lose it over small things, her anxiety levels can suddenly spike, and she sill has little idea what emotions she feels.

This might be a Zombie thread, but I do wonder if any of those people who thought their DC were cured (or their DC) would come back and say - well actually...

Late childhood (9-11) can be a sweet spot, and then everything can become much more tricky in the teenage years and beyond.

zzzzz what is the autistic equivalent of your paraplegic analogy? How do you think they best thrive in a NT world? Genuine question, I’m not trying to be critical or goady.

This whole debate is something that I’m struggling to work out where I stand. I also expect that any stance I do take may be shaped by DS’s own views on the matter once he is able to understand and express them, he is currently only 4.3.

This is still so new to us (dx Dec last year) and there’s so much we still don’t, and may never, understand about how he sees the world compared to us, and there is such a wide range of experience in NT people too.

My current (though evolving) feelings are that I don’t want him to be defined by his autism as it is only a part of the myriad of wonderful things that make up who he is. I think that I can see the child he might be if he was not affected by it. I also don’t think it’s monstous to wish that he would eat more than half a dozen regular foods or enjoy the many different experiences that his peers do or answer me most of the times that I ask him something.

Because I worry that such a restrictive diet may have a long term effect on him. We do let him eat exactly what he wants and he seems to be growing fine but it’s far from ideal. It’s also not just what he eats but where he will eat.

Yes, a mobile phone is our current saviour too. If we are out and he just refuses to comply, such as getting into his car seat, then it will usually distract him and shift his focus. I hate how it looks too but needs must.

Yes, he has vitamins and the dietitian says there’s nothing major missing but I find it hard to believe that such a restrictive diet is healthy in the long term. We’re two years in now and he eats even less variety now than he did a year ago.

The social side is tough too. Weather is lovely and some friends asked if we want to go on a picnic at the weekend. Well, he most likely won’t eat anything other than a biscuit or two and he won’t want to stay in the picnic area. He will keep running off so there’s really no point going as it will just be too stressful for us.

Open I think you are still at the wanting to appear normal stage. If these friends are really good ones they will accept that a picnic with you is not sitting on blankets for hours over food and wine while the children make daisy chains but is a little more frenetic.
They also might suggest activities that your DC can join in as much as anyone ( Learning all about Thomas etc).
With food keeping different tastes and textures available, might change things one day. Although with my "fussiest" child it took 14 years.

My son had a diagnosis of autism at 9. The Dr wasn't 100% certain and is now suggesting it is dyspraxia. He is almost 11.

We will do something with them. Inevitably it means that DH and I tag team looking after DS. We could take any amount of toys etc. but he will be more interested in exploring the surroundings than anything. Of course we will take food for him but most likely he will not eat it.

Bekabeech I don’t know, maybe. The reality is that DH and I are NT so have a desire to enjoy regular things - at least occasionally - that everyone else is able to do without thinking or worrying about it.

zzzzz that was unnecessarily harsh. With that, I’m bowing out.

Open I am NT - but I find having relaxed and accepted my DC for who they are makes for a far happier life. And I have to say no ones children have turned out as they imagined all the way through childhood - some of us just feel relieved to be coming out the other end.

And the sitting quietly child - may well be too quiet - the one few adults seem to hear speak ever.

"but being able to survive and thrive in a nt world doesn’t involve mimicking nt behaviour, in fact often the exact opposite. The most fundamental mistake is to think that you can judge how well your child is doing by comparing them to nt peers."

I do agree with that ZZZZZ and I think it's pretty much what I said after the bit you quoted? I.e. that for everybody (NT and ND) knowing yourself and being true to yourself is the key to happiness.

I suppose I also come at this from the angle of wondering whether I am autistic myself. I only have mild sensory sensitivities but socially I really struggled as a child and teenager. I was described as "shy" but that wasn't quite right as I could also completely take over conversation under the "right" circumstances. I cried pretty much every day at work for the first couple of years (despite having a masters and being in my early 20s already) because it was just so overwhelming. But stayed in the same job for 25 years and now have my niche and have done very well - challenging myself with one thing at a time.

But am I glad that I learned better social skills so I could interact better with NT people and be better understood? YES! Have my friends (most of whom I am pretty sure are NT) been an invaluable support to me through my life? YES! Do I wish I had been helped to learn some of those skills rather than having to learn them myself through trial and painful, frequent, error? YES!

Would it have been better yet if they had come to me and been accommodating of my differences? YES! And of course, many of those who became true friends became true friends precisely because they were open minded and saw something fun and kind and interesting in my oddities. But realistically, if 80% of the world is NT then the "translation" job is often going to fall on NDs and their supporters, at least in the first instance.

I know I have it easy as DD doesn't have a lot of the challenges that others here have. But I'm also aware she's younger than the age my social difficulties really started to manifest themselves, so I want to make sure we are as ready as we can be and get any "easy wins" under our belt as and when we can to help her make friends and understand the world around her as she gets older. Part of that will absolutely be understanding that she doesn't have to play crazy NT-(girl) social hierarchy games and that she will eventually find her tribe, even if things are trickier for her on the way there. And in the mean time if all else fails she always has her family to fall back on.

"We don’t need autistic people to be more like nt people. What we need is often thee act opposite."

Well this is also true.
In fact when I wrote the phrase "social hierarchy games" I did a little shudder and thought just that. How much better life would be for everyone if we could all just learn to cut through a lot of that crap? Of course some of that is also culture. In fact interactions between ND and cultural norms would be another very interesting avenue of research (which probably is being researched as we speak, but I would love to read it!)

We seem to be on a pendulum swing towards majority might, and it scares me. I hope we swing back towards valuing diversity very soon.

no ones children have turned out as they imagined all the way through childhood.

Very true. This goes for NT children and children with Special needs. I’m sure my mum didn’t evision her teenage daughter getting pregnant.

Everybody’s path in life is different, accept it, work with it, improve it and move on.