GROWING OUT OF HAVING AN ASD?

[cmuir]

Hi

 

I was out for dinner with some of the mum's of the kids in my son's class last week. One of the mum's has a 9 year old son diagnosed with AS and it turns out that one of her twins whose in Rs class is "mild". Can you tell where this is going? She announces to the other mum's that she was stunned where her son was diagnosed with AS because he wasn't typical, etc, etc. At which point I butted in that the consultant who saw him is highly respected and knows what she's talking about (she's my son's consultant). In addition, my son isn't 'classic' AS in that he doesn't tick every box (he was diagnosed 2 years ago with AS), but yet has lots of traits - he can appear very normal for a few hours or days even, but then he'll say or do something that reminds us all. She then went on to say that both her son and daughter are "growing out of it". How can this be? She hasn't done any of us any favours announcing that at the table in the restaurant. I pointed out that this is a neurological disorder, and that, for example, brain scans have been studied and there appear to be some differences to NTs. In addition, I personally believe that children with an ASD can make fantastic progress with the right support, but that there is no cure, nor is this a 'condition' that can be outgrown. What do yout think?

 

Caroline.

Edited June 28, 2008 by cmuir

[KarenT]

I personally believe that while you can't grow out of autism (it being a developmental disorder), you can over time learn self-awareness, control and strategies for working around the difficulties to the point where you don't display as many of the symptoms that may have been more prevalent when younger. Consequently it's possible for someone with autism to appear more 'normal' as they get older. Some people do seem to have more prominent autistic tendencies when younger but find coping mechanisms to make them less obvious - I think that's true for a few adults I know.

 

Just my ten pennorth.

 

Karen

x

[bjkmummy]

i had this when joe lost his special needs nursery placement - the head mistress said the following:-

'joe was clearly a child on the spectrum but has now moved of the spectrum. He is a sucess story of early intervention'

 

6 months on and hes more autistic than ever now his help and support been removed and hes not coping!

 

I think over time they can maybe learn to cope better but i cant see how they could totally 'grow out of it' cos its a lifelong condition

 

ben done so well in the last year since hes been in an asd unit attached to a school but he is still quite clearly on the spectrum he just now copes a bit better

[LizK]

I think this is a difficult area misunderstood and often used to justify lack of support and understanding. Particularly to justify the dearth of services for adults as if it is a condition that you outgrow on your 18th birthday

 

I think children can appear to outgrow autism for a few reasons

 

1. Never were autistic in the first place and misdiagnosed

 

2. Through intervention, support, time or just simply due to brain maturity the person learns how to manage their autism, learn social skills or develop mechanisms to deal with situations and as a consequence may be functionally less autistic. Or just know how to cover it up as they get older so superficially appear less autistic to the untrained eye. They still have the same basic condition just expressed in a different way

 

3. This is probably contraversial but I think theoretically a person could move off the spectrum. If we think about autism being a spectrum and those on it are not on a fixed point but can move around. What is stopping someone at the extreme higher functioning end from moving over that arbitrary line and 'off' the spectrum. There are times in a child's development when there are spurts of brain development and possibly during these times the neuronal connections could be made to compensate for some aspects of autism. I don't for one minute believe they are cured and utterly NT but I wonder if it's possible to move off the spectrum into that grey area between NT and ASD. But equally the person can move back onto the spectrum again.

 

My DH would probably have ticked enough boxes as a child for AS and he remembers the world being a mystery to him. He hit his teens and it suddenly made sense and many of his odd behaviours disappeared, functionally he had no difficulties. He would not fulfill the criteria for a diagnosis of AS now and I don't for one minute believe he is 'masking' it. Does that mean he is 'cured' or just moved sideways? He still has some autistic traits which are more obvious when he is stressed, tired or unwell. The hardwiring is there but not in the same way

 

For most autistics though it is not something that can be cured or outgrown. My son will always be autistic, that is how he is hardwired, though how it presents may alter as he gets older. That will be true for the vast majority but it is worth considering that for a very small minority they could cross that imaginary line 'off' the spectrum

 

Lx

[sesley]

its a interesting thought isn't it,but when you have to tell the DLA autism is a life long condition,and get them to understand that it is, i suppose some people have a hopeful out look they hope they will grow out of the condition,but in reality we know some will grow out of the prononced childish behaviour eventually and with the right guidence,but they will always have some diffiuculties in areas which are difficult like social intereaction, as all humans we are all so different and have different challenges ,my paged is on the high functioning end, and the challenges which seem to get very difficult just now is controlling his temper and not lashing out when he meltsdown,which is usually accompanied with not being in control of situations and not winning.,so although he is 4 years on from his diagnosis he hasn't grown out of anything,just got bigger and stronger.

[KarenT]

i had this when joe lost his special needs nursery placement - the head mistress said the following:-

'joe was clearly a child on the spectrum but has now moved of the spectrum. He is a sucess story of early intervention'

 

6 months on and hes more autistic than ever now his help and support been removed and hes not coping!

All that shows is that Joe coped better six months ago because circumstances were right for him, and now they're not. His autism hasn't changed, he hasn't 'moved off the spectrum', he was being supported. As soon as that support was taken away the symptoms returned because the problem was there all along.

 

Sad, isn't it?

 

Karen

x

[Suze]

ooooooooh...contoversial subject I think .

 

........personally ...from my experiences..

 

 

.........my son has changed in his behaviours as he has got older.However he still has autistic stuff going on that that is blatantly obvious , especially due to social interaction etc.I don,t agree that you can come "off" the spectrum its there for life.I particularly feel that as adults those on the spectrum may manage more effectively their traits, behaviours... whatever you want to call them.But they are still there and as adults they have to cope trying to manage in the NT world, well aware that its a struggle coping day to day.

[mummy]

Autism is a neurological condition as is ADHD. You cannot 'grow out of it' but you can learn to live with it and develop coping strategies providing the Autism is not to severe (eg AS) My husband has AS but I had been wit him for a few years before we actually realised - I just thought he was a bit obsessive and rude and he had forced himself to do things which he thought would please me but he found really hard, such as going to social events.

 

Now we know he has relaxed back intop his AS ways and I am far more understanding.

 

Mummy x

[aspiemum2twinsplus1]

I personally believe that while you can't grow out of autism (it being a developmental disorder), you can over time learn self-awareness, control and strategies for working around the difficulties to the point where you don't display as many of the symptoms that may have been more prevalent when younger. Consequently it's possible for someone with autism to appear more 'normal' as they get older. Some people do seem to have more prominent autistic tendencies when younger but find coping mechanisms to make them less obvious - I think that's true for a few adults I know.

 

Just my ten pennorth.

 

Karen

x

 

You can potentially learn to appear normal when out and about if you're mildly affected but it can be very tiring keeping it up. I wouldn't want to do it all day even at home. Although I'm mildly affected I never quite manage it.

[bluefish]

The more I have learned about autisum and why my son feels or behaves the way he does the more I have learned to plan prepare and avoid situations where he will become distressed.It does not mean he is "getting better" and if I work hard enough he will no longer be on the spectrum, It just means that the more I understand and the more he is able to explain we are able to use avoidence and he in some situations is learning appropriate response. I do think that we can make a difference as parents/carers and teachers to the way a child with asd copes but can we "cure" them! I think not.

It seems ridiculous that a child copes well with support so the support is taken away!!!!!!!!!! The child coped DUE to the support and now is thrown back to struggle? It was not a course of anti biotics!!!! Our children cope better at times as we are tuned into their needs. Sometimes I look at ds and think there is not much that stands out then Tesco cafe coke is out of order and I am quickly reminded that my little man is as different as they come!

[Mumble]

It seems ridiculous that a child copes well with support so the support is taken away!!!!!!!!!! The child coped DUE to the support and now is thrown back to struggle? It was not a course of anti biotics!!!!

:clap: I might borrow that one, and I'm afraid to say it (as in that attitude) doesn't go away as an adult either It's I guess what lies at the bottom (well one of the things) of what I'm fighting now - "But Mumble, we got you through one presentation, of course we know you can now do it, we believe you can" - it soooooo doesn't help. It's like it's / I'm seen as a series of things to 'fix' - we 'fix' one thing and move on to the next, and by the time we've worked through the list, you'll be cured / like us / like we can cope with you being.

[puffin]

I think for many AS/HFA children they learn coping strategies and learn and copy "NT" behaviour. It isn't as though it comes naturally to them but they learn it as though it was a foreign language. My AS daughter does this and people often fail to realise that she has AS as she copies what others do and also learns how to behave as a set of rules (which she often lectures her NT sister about) - but once in a while she will find herslf in a new situation and will appear very AS as it is not natual.

 

 

I found that my worst time was when she was between the ages of about 4 and 9-10:

- too old for her behaviour to pass as toddler behaviour

- not young enough to understand or copy others' behaviour.

[darky]

Lots of thoughts, but not sure how to answer!! Right, I think people on the spectrum can improve as coping strategies are learnt. When I was younger I lash out violently towards loud noises, now I am an adult, I still don't like loud noises but I have learnt not to lash out, even if I feel like it!! What I have learnt over many years of parenting children with ASD, there are always highs and lows. My children can have a brilliant year at school and appear to cope well, that is because they have good support and an understanding teacher. It can all change very quickly and we see massive deterioration. High levels of stress and anxiety can increase the phobias, the steriotypical motor mannerisms and sensory difficulties. So are we to say that they were Autistic, then they weren't then they were? Not forgetting a child that is passive trying to fit in. Apears ok on the outside in many situations, but inside they are incredibly anxious.

 

As a child grows, unless they have moderate or severe learning difficulties, any developmental delay is not "as" noticable. In schools children have targets and are consistantly measured against the "nt" A clumsy child will more than likely be a clumsy adult, but they probably won't choose to run over hurdles. For me, I cannot navigate myself round a car park without getting lost. So I won't be in a crowd of people with a map and compass orienteering like I might have been at school. (Not trying to genralise, just giving examples)

 

At the moment my daughter has full one to one at school. I don't think for one minute that will continue through out her whole school life. So if her support was to be reduced, would that make her less Autistic?

 

I don't believe it is something that can be grown out of. Unless, like someone has mentioned above, the child was wrongly diagnosed, although it would be difficult to be mis-diagnosed where I come from!!

[MelowMeldrew]

i had this when joe lost his special needs nursery placement - the head mistress said the following:-

'joe was clearly a child on the spectrum but has now moved of the spectrum. He is a sucess story of early intervention'

 

6 months on and hes more autistic than ever now his help and support been removed and hes not coping!

 

I think over time they can maybe learn to cope better but i cant see how they could totally 'grow out of it' cos its a lifelong condition

 

ben done so well in the last year since hes been in an asd unit attached to a school but he is still quite clearly on the spectrum he just now copes a bit better

 

 

My son 'advances' year on year, he replaces one obsession with yet another.... He can then revert to old obsessions again when it suits...

[NobbyNobbs]

hmm... personally i suspect that some people are misdiagnosed because they have some traits early on that are just extremes of the normal development troubles (terrible twos and so on) and then get past these things and are magically 'cured'. so i suppose in my mind the diagnosis isn't true until there is permanence of the traits. obviously the way they manifest changes, but the same basic problems are there. i know people who were diagnosed on the spectrum at 2/3 who then turned out to be perfectly normal in their behaviours (not just coping but clearly not having any difficulties even in situations where they could not have developed coping methods), but retained the diagnosis, giving the impression that they got better and moved off the spectrum.

 

with the system of diagnosis being to tick X number of boxes on a form its bound to happen that at a certain point some NTs exhibit enough of the behavours at the same time to get a diagnosis, when they might have just been having a bad year developmentally. i'm particulalry aware of this as i have two sisters who could both tick every box available for an ASD, but are actually just developmentally delayed as a result of external factors, and have behavioural and social problems as a result. eventually they will catch up and be like other NTs their age.

 

although i completely agree early intervention is essential for establishing coping methods for the problems of people with ASDs i think its also a bit misleading to base a diagnosis for the 'milder' spectrum disorders like AS on only 3 years of life in which all children have to deal with massive developmental hurdles. personally i'd rather have a diagnosis from the latent 5-9 age group when they're developmentally stable, but learning the social rules that are the big problems for AS kids.

 

so i think what i'm saying is that perhaps the diagnosis system is at fault and that some children grow out of their diagnosis, but that its not possible to grow out of an ASD if that really is whats going on.

[gothschild]

I think that some people will just never get it, I have family members now that insist that my son is just 'slow' (I hate this!) and that everthing will get better.

 

J can come across as being NT at times and then he will remind you that he isn't, he has recently started straightening up items in shops like birthday cards and tinned goods ,its endearing to watch, but its also a stark reminder.

 

I agree with NobbyNobbs, I don't think that you can outgrow autism and believe that some people are just misdiagnosed, this is why its so hard to get a diagnosis when your child is young because of the different rates of development.

 

 

gothschild x

Edited July 6, 2008 by gothschild

[darky]

The diagnosis system is at fault, I agree with you 100% on that. Up and down the country there is such a variation on assessments, that problems are bound to occur. Where I live, a child will not be dx with Asperger's until 8 years old, because of the higher order language skills are hard to assess on a child younger, and to see whether developmental delay or something else may be the cause of the symptoms. (at least that was what I was told by the consultant) Instead a child may be given a dx of ASD for younger children, with a view to reassessment later if ness. I have heard of cases (not round here) where a child has been given a diagnosis after the first visit! There is a standard "tick the box" diagnosis system, so why there is not a standard assessment process is baffling.

[NickyB]

My understanding is that, although many people can have Autistic 'traits', in order to be regarded as on the spectrum, you need to have problems in several areas (the 'triad of impairments'). These are : issues with communication, social interaction and the ability to think flexibly. They may also have sensory difficulties and learning difficulties. (you probably already know all of this, so I'm sorry if I've gone over old ground)

 

In my son's case, he has problems in all of these areas. However, there are many days when he can seem quite 'normal' (whatever that is!), and some of my friends had no idea that he had any problems. The problems he does have can vary in the way they show themselves - e.g. he will go from one 'obsession' to another (right now, he's into cars, but a few weeks ago it was numbers).

 

As he has grown (he's now 5), these traits have shown in many different ways, but they have always been there and, I believe, always will. It's just a case of finding a way to manage them. The support we have received has really helped to improve things for him, and us, but I don't believe he will ever 'grow out of it'.

 

Having said that, I hope I'm wrong !!

[Shnoing]

As you grow older, you more and more learn to anticipate what is expected in social situations but that means you need quite a good part of you brain power to 'act' like a NT - which is performed with total ease by NTs themselves. As a consequence, you regularly need some time to get calm and 'restore' yourself.

 

This is nothing you can grow out of if you're on the spectrum.

[cmuir]

Hi

 

I feel very strongly that autism is a neurological disorder than cannot be outgrow.

 

Think we all seem to be in agreement that you cannot outgrow autism, but you can learn management strategies, etc.

 

Caroline.

[loobylou2]

Can I just say how brill this forum is? Especially with threads like this! Have just been told by dd's pysc that she hasn't got asd now, but if she had been assessed at 5, 6or 7 then yes she certainly would have been Dx'd, so she has 'grown out of it' It's thanks to places like this that I can get the information I need to fight the case so thanks everyone!!