Feeling really shitty after 2nd paed appt - am I just a neurotic parent?

[skidd]

Hi all,

Have posted a few times about my DS1 (4) who is being investigated for possible HFA/AS here, here and here

Just back from 2nd paed appt and I came out feeling like a hysterical overprotective nightmare mother. She kept asking DH, do you have concerns as well, and listening to what I said, smiling patronisingly and then looking to DH for his answer. Maybe I am being paranoid but I feel like she thinks I am almost wanting him to have ASD when he doesn't.

His imaginative play is good so she thinks he wouldn't meet criteria for diagnosis (fair enough) so I asked her what else might be causing his difficulties and she said he might just be an anxious little boy with attachment issues - he really really does not have attachment issues - and what about his lack of social interaction, insistence on routine, sensory issues, motor development, flapping.... isn't that just a step away from calling me a refridgerator mother?

Anyway she is referring him to a psychologist and an OT and she will discuss with the psychologist whether a multidisciplinary assessment is the right way to proceed, which is positive - just wish I didn't feel like it is my fault

Any advice/sympathy/experiences (positive or negative) much appreciated!

I think you should look at this as positive as she is asking other peoples opinion. Next time if the paed says something you don't agree with say I don't agree and be firm. You are just as important as the professionals. If the paed puts these thoughts in a summary of this meeting in writing - write back and say you don't agree. Keep a paper trail.

I am sorry you have been left feeling like this. The good thing is, as wasuup said, is that she is going to refer him to a psychologist. A psychologist is more than capeable at dx autism in all its forms. I also think wasuup is right about writing back politely, copied to whomever she has copied in (GP, School whoever) and saying you disagree and why.
Sorry I haven't anything more useful to offer. Good luck

Thanks both - good idea to keep a paper trail. I am pretty rubbish at being pushy/assertive and was relying on DH to do this but he seemed to think the outcome was good - I guess the outcome was good - it's just that I have been left feeling a bit crap - but actually DS is being referred on and that is obviously the most important thing.

She said the school wasn't worried as his teacher last year didn't think there was a problem, but this was the same teacher who told me he didn't have a squint when he has been going to the eye hospital for nearly two years now so I don't really think too highly of her observational skills!

Can anyone tell me about how much knowledge a community paed has of ASD? Did she do a medical degree then specialise in paediatrics so sees pretty much all children with health problems? Or would she be more specialised than that? We were seen by the 'paediatric neuro-disabilities team' if that helps

That I don't know, my ds's community paed will and does confess when she does not know something, but she may be one of a kind. I would guess from the neuro-disabilities description, yours is a bit more knowledgeable than a regular paed...but I could be wrong.

I feel just like this today :( hv just told me that its normal for a 2.5 yr old to wake up 10 times a night, normal for them to starve themselves on a weekend away and normal for them to have panic attacks! Hmmmmm......
Sometimes you have to push for what you think is right. Luckily our paed is behind us however the pysch and hv disagree with him and make ne feel neurotic!

The community pead (school doc) saw my DS and put in the report about no eye contact poss ASC, sensory issues etc and that she was referring to OT but in the same breath also wrote "no long term follow up will be required"

That was last July and he has ended up the most followed up child going!

Your pead has done/is doing the right thing by referring on to people more experienced so you are at the start of your journey :)

I think as mothers we are vulnerable before we walk in the door as the first instinct is to blame ourselves and think it is something we have done, or how did we miss this early on etc so we are fragile even before the questions start and so they hit home and leave us feeling awful.

Developement Peads can dx in some areas but mostly dx is through multi-disiplinary teams :)

One of our Community Paeds actually had a book open on his desk about ASD and was checking things off a list in it! The other is a lot better, but then he's actively involved with the dedicated ASD assessment unit - which I know we are very luck to have in our PCT.

As others have said, its good that she is referring on to a psych, as it is generally a multi-disciplinary team, including a clinical psychologist and OT, that will dx ASD, rather than a paed - not in every case, but in most. If she didn't think you had cause for concern, she wouldn't have referred on and would most likely have gone for 'watch and wait'.

As for the school not having concerns, you only have to read this board to know that teachers/schools are not qualified to dx and very often incapable of seeing/noticing the signs of ASD. My own ds's teachers told us over and over that he was fine, whilst at the same time pointing out the very behaviours that were red flags for ASD - he was eventually dx'd just before his 9th birthday, but only after he'd had a breakdown.

Not sure if you did this, but for us it helped to type up a full developmental history for ds - prenatal to the present day, including milestones, health and concerns at different ages. This has been used by every professional that ds has seen and they've all said its incredibly useful and saves a lot of time going over the same history with every new professional. We keep it up to date now and make sure every professional has a copy before our appointment. I think it helped them see the patterns and consistencies in ds's behaviour and as a result made it unneccesary for them to question our motives, iyswim.

I would follow wasuup and Sparkle's advice about responding in writing.

Thanks all

moosemama - yes we have a list of concerns, a diary and a food diary which we handed over. Paed laughed at how long it was and kept referring to the fact that I am a psychologist (actually I am an academic in a psychology department so know nothing about diagnoses etc). I have also read on here about schools not picking up on difficulties but I was worried by how swayed she was by school's opinion. So sorry you had to wait so long for your DS's diagnosis - hope he is getting more support now?

coff33pot - yes I think you're right about mothers - i am pretty sure my DH isn;t sitting at work now wondering if the paed blames him for DS's difficulties!

chundle and at you HV - great your paed is behind you though - it is such a fight, isn't it?

I have been advised on here to apply for a staement even before dx - might start looking into this - can't bear just sitting and waiting

Thanks for your replies - am already feeling a bit better

When our paed had reported an anxious little boy with attachment issues they had actually raised child protection concerns believing I had attachment issue with my ds for querying possible HFA. There is a bit more background in that I had already complained about the paed and it later transpired she was too ill to work.

However I would tread very very carefully as they will want a reason for attachment issues. We were referred on to multi disciplinary team including psychologist and psychiatrist and the experience still gives me nightmares every night after years. I have lost all faith in professionals. We had no signs of attachment disorder, never was a child more secure and loved and wanted. It was later found he was in extreme pain with an illness the paed had failed to consider!

Reading the medical records after the event it is unbelievable to see that everything is distorted to the point that my husbands contribution to every appointment is not mentioned and all reports state mum says etc and every fact is twisted. I ended up taping every meeting and am so glad for my own sanity even though I have never used them in our legal fight. When I compare their records to the tapes it is incredible that so called professionals could lie even quoting what I had supposedly said.

I would recommend documenting everything, send all correspondence from both of you, never going to a meeting without your husband, giving evidence from everyone else to support your examples ie HV, nursery etc and ask to be copied in on all letters sent for referral then you will know what you have been referred for or best advice is access medical records and see what has really been written and then you know what they are considering. Sorry this is so negative and hopefully not the norm but it is worth being aware of what can happen to a normal loving professional family.

Good luck

Oh my God insane, that sounds like a horror film or something. I'm so sorry you had such an awful time. What happened in the end? The more time I've had to think about it, the angrier I am about the attachment comment - like your DS he could not be more loved and cherished, how dare she lay the blame at my door

our legal fight continues but the incompetent paed who first raised the attachment and cp concerns has not worked since my DS had his correct medical diagnosis by another paed and we first complained about her. I presumed this was due to stress but I am now told that she is terminally ill so will never be returning to ruin any other lives. We are now getting the correct medical help for our DS but I cannot forgive all the lies and especially the years of extreme pain that my DS suffered unnecessarily and the fact that there has still been no apology.

From the research I have done it is not uncommon to blame the mother for suggesting HFA but it is still the most awful accusation. The key thing I think is to see a copy of the referral letter. Often just a call to the secretary and they may send it to you without checking with the paed and this will let you know what they are considering. If not you can usually view your records for free quickly at the hospital which is easier than requesting the photocopies and having to wait and pay. Either option will mean you know where you stand and then you can proceed appropriately.

insane - how horrendous for you - I hope you get the apology you deserve.

That's really good to know about requesting a copy of the referral letter - might ask my DH to do this [scaredy cat].

The paed phoned yesterday to say she will refer DS to a psychologist asap and the psychologist will judge whether a full assessment is the best way to proceed. She was quite nice on the phone so maybe the attachment comment was just said without thinking - that's what my DH reckons - hope he is right

DS climbed into bed with me this morning, hugging and kissing me and telling me about his dreams - he definitely does NOT have attachment disorder

It sounds a bit more positive skidd, so good luck.

skidd

as can be seen from the contributions to your thread, the real issus is the lack of a multi-discipline approach to the assessing a wide range of complex issues. No single profession or professional can be expected to have all the answers, this is not possible. The professionals need to be honest enough when they do not have the answers you are seeking and admitting the issues are outside of their remit or professional qualification. So there are the jacks of all trade and masters of none professionals peadiatricians and GPs, and there are the specialist professions who have a limited specified area of expertise. What is required is for all of these professionals to work together in multi - discipline teams based on a case by case needs of the individuals involved. And then there is the big issue of whether the professionals you are referred has kept up to date with research advances sine the day they first qualified. Which can only be monitored if each professional had to renew a license top practice say every three years, and having to prove and demonstrate that they have kept pace with recent research based progress in their specified area. The set period compulsory renewing of a license to practice should help weed out the more incompetent professionals, who currently hide in the NHS and private practice (charging high a fee looks good).

dolfrog - yes I completely agree - do you work in the NHS or are you just knowledgeable through personal experience (if you don't mind me asking)?

I think our paed was indirectly admitting that DS's case was beyond her expertise and hence the referral to the psychologist. I wonder whether the psych will have specialised enough knowledge for a borderline case like my DS. I hope so

skidd

My experience comes from helping to run an support organisation for a little understood and recognised disability auditory processing disorder (APD) All of my family now have a clinical diagnosis of APD. But the recommend support is non existent in the UK. According to the UK Medical Research Council (MRC) 10% of the population has some degree of APD, which is about 6 million people most of whom will have never heard of APD let alone know that they have some degree of APD. The MRC carried out a research survey to discover the awareness of APD amongst GPs and ENT audiologists and the results were frighteningly low. And then there are tor recommended support professionals such as SALTs who seem to know even less. A complete lack of joined up thinking poor professional training and or professional incompetence.

Hi dolfrog - that's really interesting (and depressing) - I didn't know APD was so little-understood. I am pretty sure I have it and reckon DS1 also has it. In fact I thought about bringing it up at the meeting with the paed on Wednesday but now am sort of glad I didn't as it might have given her more reason to think I am some crazy neurotic mother....

skidd

The only way we at APDUK have found to work around this combined professional ignorance is by providing support research papers to support that APD exists, and describe how it may be miss diagnosed as something else.
There is also a CiteULike Audiology and Auditory Processing Disorder research library, and an adult APD forum the OldAPDs now over 11 years old with 600+ members. So there is information to support that you are not a neurotic mother, but have some real concerns.