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I don't believe that my son has autism...

(48 Posts)
adrianna1 Wed 26-Mar-14 02:48:58

He has been diagnosed with autism....but I really do not think he has it. When they were assessing my DS they said he was a very complicate case, but he had just about enough of the criteria to be diagnosed with autism....

I generally believe that my son has a language delay and ADD...

I am not in denial. But none would believe me anyway and they cannot take away the ASD diagnosis and I am positive that it is not ASD.

Well...if I tell people this they would think that I'm in denial. So I'm not going to mention this to any profession.

adrianna1 Wed 26-Mar-14 02:53:13

Only time will tell.

Skylar123 Wed 26-Mar-14 07:07:47

You could ask for a second opinion, speak to your GP or ask the Pead involved with your Ds to refer you. You could also discuss your doubts with the Pead, this may help.

magso Wed 26-Mar-14 08:30:28

Agree with Skylar. Also discuss it with the speech therapist, as the diagnosis may affect SALT provision.

TheLightPassenger Wed 26-Mar-14 09:10:22

it sounds like a perfectly reasons question/niggle you have, that you feel your child's issues fit the criteria for ADD more than ASD, no harm at all in raising the issue politely with whichever professionals he is under.

zzzzz Wed 26-Mar-14 09:14:56

You can refuse any diagnosis.

What do you feel are the differences between autism, and language delay with ADD? Because that's really the crux of the matter isn't it? What difference do you feel there is in the two dx?

OneInEight Wed 26-Mar-14 09:21:20

Do you think the support given to your son would be different / more appropriate if he had a different diagnosis?

Do you think the strategies used for ASD children might be harmful to your son?

If the answers to these questions are 'no' then it probably doesn't matter exactly what the diagnosis is.

We have wondered whether the 'AS' diagnosis is correct sometimes for ds2 but he is receiving good support - small class size, 1:1 TA, personalized curriculum etc and probably better than he would get if he had been given just a generalised 'anxiety' label.

I also know I had a very poor understanding of what ASD was when it was first suggested for my children - but the more I learn about it the more I aware that they tick so many of the boxes.-

ohtowinthelottery Wed 26-Mar-14 10:02:00

I was never really certain about the diagnosis for my DS either - partly because the team who did his assessment weren't really sure either. But they decided to give him a 'label' of HF ASD anyway as they said it would get him the support he needed at school - which it did.

As oneineight say, is the diagnosis likely to make the support he gets any different or be misleading. In my experience, all sorts of assumptions have been made about DS because of his label by well-meaning teaching staff - but I don't think that is because he had the wrong diagnosis, more because some 'professionals' know a child with ASD and think that every child with ASD is the same.

You are not in denial, as you accept that your DS has some difficulties which need support - you just have a niggling doubt about the nature/cause. If he gets the support he needs, don't lose any sleep over it.

tacal Wed 26-Mar-14 10:18:01

I would ask for a second opinion if I felt the way you do. I know someone who did this and the dx was changed slightly.

adrianna1 Wed 26-Mar-14 10:18:32

Hi everyone

Thanks for understanding, I thought I was going to get slated.

@zzzz I did not know I can refuse a diagnosis...but to your question..I really do not know, because all the three diagnosis intertwine with each other in terms of symptoms and I don't think theres much difference, but au.

I knew my son had attention issues from birth, I don't think he has ADHD but ADD fits him more...( I always thought this). The doctor at the clinic thought my son had attention issues and mention ADD/ADHD ( without me mentioning anything) hence why she gave him the diagnosis 'learning difficulties', but is too young to be tested at the moment.

- At the assessment, which they admit, that they were very confused about my DS..but because he is delayed for his age group..they gave him a diagnosis...they also said that even though he shares his interests with me...he needs to do it a lot more.. they kept going on about how his delayed for his peer groups.

- But he does have a lack of facial expressions.. i.e. he can do surprised, angry, sad, confused, happy...but that is about it... at the assessment they said he had a blank expression except from smiling. Even though he has a very good understanding of emotions... I don't know if that warrants ASD or not

- With not being so sociable to other adults/kids.... I think this is because my son has trust issues...cause of what he has been through..which takes him longer to warm up to people... in terms playing with kids, he would play with them but when it comes to role playing he does not really understand...I feel a bi sorry for him, the kids at nursery have their own friendship groups but my son feels left out. I've seen my DS play with kids, I just don't know why it is limited in the nursery...

- I do think my son and I have attachment issues which need too be resolved and he gets traumatise easily.

- My son has a severe language delay..I do not know if this has a big impact on his social interaction, social communication skills.... but I guess I have to wait to see how he develops...

adrianna1 Wed 26-Mar-14 10:23:57

I really want my son to go to a speech unit, but I know that this will be difficult because of his ASD diagnosis. I have looked at the ASD units and language units but the ASD units do not really concentrate on the language skills.....

zzzzz Wed 26-Mar-14 10:24:47

".I really do not know, because all the three diagnosis intertwine with each other in terms of symptoms and I don't think theres much difference, but au. "

But then what makes you say he doesn't have one, but does have the other?

I think you need to meet some more children who DO have ASD. Strangely it was at a MN meet up that I first realised how severely my ds was effected, because for us he is just ds1. I went worried that I had over egged his difficulties, and came back knowing he was a paid up member iykwim. He still isn't very like the other kids with ASD I know/know of.

RaRaTheNoisyLion Wed 26-Mar-14 10:47:32

I don't think you're in denial. I think this kind of thing is more common than you think.

However you need for focus on what difference it makes to what your child needs. Refining the accuracy of a Dx can come later unless it is causing either harm or lowered expectations or is getting in the way of investigations into something that will bring more appropriate help.

RaRaTheNoisyLion Wed 26-Mar-14 10:50:58

I think your concerns regarding Wanting him to attend a SALT unit are valid.

Ask them to state specifically in writing what it is about ASD that they cannot cater for. They are likely to say rigidity, behaviour, unmotivated to socialise I reckon (as a mother of a child with classic ASD who attends SALT School).

adrianna1 Wed 26-Mar-14 11:41:04

- Because he wants to communicate....

- I don't know...but only time will tell how he will be like.

bochead Wed 26-Mar-14 12:34:26

ASD is a communication delay - in very specific areas of communication only rather than a more general communication delay. Language delay is a global delay in ALL areas of language acquisition - is this really your child?

It may be just very specific areas of language that you need a SALT to really drill into and help you sort out iyswim.

Also specific sensory issues are not part of ADD, (which again could be considered an overall delay) but they are part of ASD.

When younger a LOT of people (and more recently a new GP - gggrrrrrr!) mistook my son's sensory problems for ADHD when actually he very much isn't. Put him in the right environment and his concentration is vastly superior to most of the population's - it's just a shame that environment wasn't a busy urban one, or your average nursery/mainstream school.

For kids under about 7 I personally feel it can take a very skilled clinical team to tell the difference in SOME children between sensory processing disorder (often viewed as a subset of ASD), add/adhd. For this reason it may be worth waiting a few years and revisiting the diagnosis when he's older. My original diagnositic team wanted to take another look at my son when he got to 12! Great from a clinical perspective, but NOT helpful from an educational one. It did bring home to me that no diagnosis is necessarily written in stone, and that changing/removing them as a child develops is something that is far from a rare occurence in complex cases.

Educational provision is by law supposed to be based on NEED, not diagnosis, no matter how LA's try to wriggle out of it, so as a first step I'd apply for a statement, while the case law still applies (the system changes in September) so that if you have to go to Tribunal for that SALT unit place you want you can and stand a good chance of getting it.

The IPSEA website has excellent model letters to help you do this today.

Only after I'd done that would I go back to my GP and ask nicely if I could please have a second opinion - getting a second opinion is easy to do on the NHS - it's just with waiting list times, I'd go down the statement route for a belt and braces approach to getting that school placement in time.

zzzzz Wed 26-Mar-14 13:43:16

My child has ALWAYS wanted to communicate. Having a communication disorder/delay doesn't mean you don't want to communicate it means you find it difficult/baffling.

I was very hmm about ASD when ds was younger because I had ideas about what children with ASD are like. They can be clingy, shy, extrovert, mean, grumpy, funny, adventurous, timid, appealing, boring.....the whole population.

AlarmOnSnooze Wed 26-Mar-14 14:49:30

I have two girls on the spectrum (and quite likely a boy too - time will tell!) and they couldn't be more different, in terms of severity, learning difficulties etc. but one thing they do have in common is a desire to communicate. Dd1 has a severe language disorder but even before she was verbal she was desperate to share with us and generally communicate.

needmy Wed 26-Mar-14 17:48:07

I think you can disagree with a diagnosis, get a second opinion etc but I am not sure zzzzz is right about being able to "refuse" it. The diagnosis is probably in letters and computers by now and will need active effort to get it taken off. One of my worries about use of labels to gain access educational support is the timebomb effects on the children who will be adults one day. You don't have to tell people your diagnosis, but there the diagnosis sits in your medical records and may crop up as non-declared in travel insurance claims etc.
If you think it is wrong, you have to have a discussion about it with the professionals who made it.

adrianna1 Wed 26-Mar-14 20:51:23

HI everyone thanks for the replying...@zzzz sorry I meant that he has the desire to communicate.

@Boched- Yes my son has a global delay in language, rather than disordered (the doctor said) - the doctor said this too but they felt as he is delayed for his peers his age they diagnosed him.

adrianna1 Wed 26-Mar-14 20:53:38

sorry forgot to add @Boched- my son has no sensory issues, the specialist said that his minimal 'stim-like' behaviours stem from his lack of verbal communication and as he starts to speak more, the stimming will decrease.

zzzzz Wed 26-Mar-14 21:11:51

I meant the desire to communicate too.

They told me the same thing about the stimming, it hasn't proved to be the case. He does those non-functional things when he is stressed. So yes, it was more stressfu/l frustrating when he was less verbal, but we do more now so he is put in more awkward situations.

Your som is quite young to tell if it's delay rather than disorder.

adrianna1 Wed 26-Mar-14 21:34:00

Is lack of facial expressions an ASD thing? Can kids without ASD present this.

PolterGoose Wed 26-Mar-14 21:43:05

My ds has a very expressive face, I don't think it's an ASD thing.

zzzzz Wed 26-Mar-14 22:25:14

All these little traits aren't there for everyone, and are a very small facet of the whole diagnosis. It's a bit like saying, he can't be Scottish he doesn't have red hair.

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