Fixated on giving your son an Autism 'label'

[PunkyBubba]

Not sure what I am looking for, but guess I just need a rant to get this off my chest... So it was DS1's Diagnosis review today. He was given a working diagnosis of autism when he was 4, even though a SALT first brought it up when he was 2 yrs 3 months old. He is now almost 6.

DH and I weren't bothered about chasing the full diagnosis as we know it changes nothing, but his school have been pushing us to follow up as the review was meant to be last year.

Anyway, I met the psychologist (for the first time) this morning. She asked me some open questions such as "what are your concerns".. I answered as best I could, starting to explain the difficulties he has. She then said that based on the reports from 2 years ago she believes there is confusion over whether DS1 actually has ASD (as he does have a vivid imagination, has made great progress in a lot of areas , and she noted he made eye contact with her)... I then asked what about his sensory issues, communication issues, behavioural issues, social issues, PDA traits... etc... she then followed up with "You seem fixated on your son being given an autism 'label'.. You are even using all the autism terminology like 'PDA'".... This was 5 minutes after we met..

I was so surprised I just stammered something nonsensical, which she talked over anyway... but now I am really hacked off.. I use autism terminology as I have spent 4 years researching it, reading every book I can, etc in order to help him. I'm not "fixated on him having a label" .. I was only there because the school wanted me to be!! Whether they give him a full/working or no diagnosis doesn't change our day to day life!! Why didn't I say this at the time!?!? Well I guess as DS1 was outside in the corridor (he refused to come in the office) on the iPad and I knew any second he would jump up and do a runner... which he did... so I was a bit distracted!

Oh, she also said she had been researching other conditions that he might have instead of autism... again based on reports from 2 years ago.. before she even met us.. The whole thing seems a joke.. She is setting up another meeting in 2 weeks as we had to cut it short when DS legged it, so I know I will need to say a few words about what she said!!

[Waitingforsleep]

It never ceases to amaze me all of these people who are involved in supposed care!
Was this Camhs by any chance? We have had useless people and I have had to grow thick skin!
You are not chasing a label but simply wanting to find some answers.
If a child had a hurt ankle you may want to know if it's bruised, sprained, fractured or broken. What's the difference?
Really hacks me off!

[pandyandy1]

If it were me, I would begin that next appointment by making it absolutely crystal clear (in a firm tone) that you are not remotely fixated on a lable! I would explain that you have come to learn specific terminology based on extensive research of how best to help your child, as his development is undoubtedly different to that of others' and then I would directly ask the question... if it were her child would see not want to know the reason for those differences? I would let that Dr know that I was offended by the 'fixated on a label ' statement and reinforce that your day to day life will not change because of a diagnosis but that school may be able to provide further support, hence their insurance on the appointment and that can only be positive!!!

I am a very principled person and that lady needs to recognise that she should not be making snap judgments!

Xx

[pandyandy1]

*insistence on appointment

[Waitingforsleep]

I took mine to pals for this reason and they are taking it very seriously

[Marshmallow09er]

Punky that sounds like an awful meeting (I was also going to ask if it was CAHMS).

Some good advice above.

My DS has a great imagination, but he's also autistic. And the eye contact thing is such a myth.

Have school provided any written supporting evidence you can take? I've always found people listened to me more when it wasn't just me saying it (it should not be like that though).

You are quite right that a diagnosis won't change anything day to day for you all, but if your DS is finding school difficult it might unlock more support / understanding for him there. Especially if there are PDA behaviours - in our case, school have needed A LOT of external guidance and support as it was totally out of their experience.

Plus for my DS, it's about knowing who he is. He fully embraces being autistic, he's very matter of fact about it. It helps him understand why he finds some things more difficult than other kids in his class etc. And also we like to celebrate it too. His classmates all know and are very accepting as well. All the better from an early age I think as they all just grow up with the knowledge.

[PunkyBubba]

WaitingForSleep no not CAHMS, but a company the NHS use in our area for autism assessments.

You are not chasing a label but simply wanting to find some answers.

Exactly.. I also didn't like the way she kept talking about "autism label" as if autism were something unpleasant.. I was not fixated on him being given an autism label.. Every other professional that has seen him since he was just over 2 has said he was probably/almost definitely/definitely autistic, and everything I have read/seen/heard backs that up, so I talk about my son's as if he has autism as I have no reason to believe he doesn't!

[PunkyBubba]

PandyAndy that is more or less exactly what I plan to say to this woman..

DH can't seem to understand why I am angry about this.. but has now said he is coming to the next meeting. He is quicker at pushing back on people.. I'm terrible in situations like this and only think of what I should have said afterwards.

[PunkyBubba]

Marshmallow yes, it was so frustrating, I know the eye contact thing is a myth, and autistic people can have a great imagination so was surprised this psychologist didn't seem to know that!!

DS goes to a special school so I am not sure what extra benefit they get from the diagnosis. His reception teacher learned to read him very well after a rocky first few months (where he wouldn't engage in any lessons/learning at all) and he jumped EYFS bands in all areas in a few short months. He has a new teacher in September though and the transition will be hard again. The psychologist today said she will arrange a meeting with his reception teacher once school restarts, so yes maybe I will be believed more after that meeting.

[Bananasinpyjamas11]

Looking at old reports and 'chatting' is not an assessment - so whoever they were, unless they were doing a multi-agency assessment had no basis to make any kind of assertion about anything. Eye contact is a small part of an assessment, which should include various psychological tests, ADOS and DISCO etc.

Without that she's basically talking out of her arse.

[notgivingin789]

Some professionals hate it when parents know more stuff about them or when the parent knows everything about XYZ conditions. I would know as I've have encountered this myself plenty of times. But it's your child ! Of course, as a parent, you would naturally want to know what's going on with your child. Some professionals fail to see this and hence a parent knowing more about them makes them look inferior.

Please don't let this bother you because as at the end of the day... they have their own lives, their own kids, their own families. It will be all on you battling your sons needs. Not them.

I pushed a diagnosis for my DS as I hated being stuck in limbo mode ( even though a diagnosis didn't do much). A diagnosis, did however helped enormously when looking for schools and knowing which one wouldn't be right for DS. Plus look at it from the eyes of a child, when I was growing up... I had huge issues with co-ordination... though my parents didn't seek a diagnosis. If I had some sort of diagnosis, I will feel some what complete... can't explain... like I'm not just "clumsy" but I have a condition which makes me this way.

So, if your worried your DS may have ASD, then yes push for an assessment. There's loads of children with ASD who have huge imagination and have very good eye contact. It's not about that. I knew a boy who had very good eye contact... but it was odd... he didn't know when to give appropriate eye contact or not..like he would look at you and smile ( when you smile at him) but he would continuing looking at you and smiling for about 20 seconds. He struggled with social cues... that's what they will be looking for.

[PunkyBubba]

Thanks Banana, you are right. The original 'working diagnosis of autism' was given 2 years ago after months of home visits, and a multitude of professional reports. We were told it was not a formal diagnosis as he was so young, and he was non-verbal at the time so it was inconclusive as to how much he understood, etc. For this psychologist to say 2 years on, within 5 minutes of meeting me that she has doubts about an ASD diagnosis is ludicrous.

[notgivingin789]

DS special school told me that I shouldn't need to seek a particular diagnosis for DS (even though it's so bloody obvious his has it as every professional has said so) because his at a special school and getting all the help...also they would think about putting a referral in.

Whether they put a referral in or not, I am going to put a referral in anyway as I know this will help DS in the future.

[PunkyBubba]

Hey Notgiving

Sorry, I was about to reply to you but DS finally agreed to go to bed so been settling him.

I'm not worried that DS has autism. I know he does. I was in denial initially but every professional we have seen since, and everything I have seen/learned since about autism backs it up. It already is our life and our reality.. I think that is why I was so angry.. Someone who didn't know us was questioning that, and making out I was somehow obsessed with labelling my son, as if it would change anything or mean anything really.

As I said before, it was his Special School that has been pushing for the formal diagnosis... I have no idea why but assume it is a tick-box exercise for their paperwork, as it wouldn't change how they deal with him on a day to day basis.

You are right I should try not to let what she says bother me though.. I know my son, and what she says is irrelevant in the long run!

[tartanterror]

It sounds like this professional handled this in a clumsy way. If it were me I'd go back to the next appointment and just ask to clarify why you are seeking diagnosis.

I think it's fine to say you didn't feel you covered that well. I wouldn't specifically mention her dodgy comments but would say that:

• the school has initiated this process
  
• it's time the working diagnosis was formalised.
  
• although his current setting understand him, a diagnosis is important as he gets older and secondary transfer & adolescence approach.
  
• You need to think about and plan for his future. A diagnosis is essential so that you can advocate for him.
  

That's should shut her up!

[tartanterror]

That not that's

[Checklist]

Remind her that a label is only a signpost for help! It may be helpful, if he has to move to another school, to access autism specific services like anything the NAS do to help young people into employment, get social care and support (he might need supported living as an adult), to get DLA/PIP/ESA, etc and for you to apply for a carer's assessment!

[youarenotkiddingme]

I think I'd open up with. "With regards to your comment about the 'autism label' I'd like to reassure you I am not seeking a 'label' as autism is a medically diagnosed condition. Therefore as your understanding of what autism is is limited I'm formally requesting another consultant. I am seeking a diagnosis for my son at the request of his school and to be able to support him"

[PunkyBubba]

Thanks Tartan and Checklist . I will definitely take notes from the suggestions on the thread to say to her whenever this next appointment is (nothing through the post yet).

Youare your post made me laugh. I wish I had the guts to use your words, and request another consultant/psychologist... The multiple references to 'Autism label', and the way she said it is I think what angered me most.

I will see how the next appointment goes. At least I now know what to expect so am more prepared for her, and not having DS1 there will help as I can be more focussed on what I want to say.

[youarenotkiddingme]

Tell her a label is what you put on a gift.
A diagnosis is what you give someone with a medical difficulty.

[notgivingin789]

youarenot

Yes. 👏👏👏

I feel a bit unnerved when people say "it's just a label". It's really isn't !!!!

[Waitingforsleep]

Omg I'm
So using the quote about a label being for a gift!!!!!!!!

Why oh why do people keep saying this! It drives me bonkers!
It's like not being able to say my son has asthma or diabetes - are they labels too then?!
Going for a lie down before I really rant!!

[Oblomov17]

Goodness this would really get my goat.
I use the terminology correctly because like you I've spent the last 7 years reading about it.

I would like to make a suggestion.

why don't you write down in an email, or on a Word document everything that happened, everything this woman said.

maybe even a writing a response, in a different colour to all the bits that irritated you.

and then just consider sending an email to her. not a complaint, because that just gets their back up. Play dumb.

just asking her to clarify what was said at the meeting/ and ask her to agree on your recollections of the meeting.

Then you have it all in writing.

and at least you have this documented.

you don't need to send it to her. Now. Think about it for a day or 2.

but that just writing it down now when it's fresh in your memory might help and then you can decide if you want to use it.

[HotPenguin]

The psychologist sounds ignorant and rude. For next time prepare to say things like:
"Can I stop you there, what do you mean by that?"
"I'm afraid I don't agree"
"Do you think autism is a label?"
Good luck.

[Ellie56]

She sounds spectacularly useless. Probably about on a par with the psychologist who reassured us our son was "definitely not autistic" on the basis of one hour's observation when we knew he definitely was autistic and had known for about 3 years.

And yes having a formalised diagnosis is useful. My son went to a fantastic specialist college and a diagnosis of ASD/ASC was part of the acceptance criteria.