ASD vs AD. Aibu to think they just want to blame me?

[Afflictus]

Hi, I have posted previously about 9yo DD who for the last three years has had violent meltdowns daily, was/is suicidal and lots of other issues.

I was open minded about what was causing this in the beginning but after several posters suggesting it on my threads, and having met other parents with HFA girls who suggested my DD sounds very much like their DC, I have seriously considered ASD as a possibility. I have read around the subject and decided it was at least worth pushing for an assessment.

After several years of asking for help and being denied, the school got involved and we were finally accepted to CAMHS and have other professionals like a social worker. A couple of these professionals who have worked closely with DD have agreed that there appears to be an underlying condition.

We were given 8 sessions with a CAMHS worker, the first two being spent going over our story to date, one session with DD and one session with me. Initially they wanted to spend most of the sessions with me so I'm assuming they think it's a parenting issue.

I have been honest in saying that my relationship with DD is severely fractured but this is in response to her difficult behaviour and I don't feel it's the other way round as I was very close to her when these problems initially manifested. The CAMHS worker was initially saying that he thought my DD was mimicking the abusive behaviour she witnessed from XH and that we had an abuser/abusee relationship. This isn't something I agree with.

At the last session, he went through the Coventry criteria with me and I felt that DD ticked boxes in both categories, ie. it could be either. At the end he said that 'we are both in agreement that she presents more as an attachment disorder'. I don't actually agree, I felt is was 50/50 at most and much of the criteria centres around presentation in boys (if I've understood correctly about presentation often being different for girls) but I struggle to challenge professionals.

I didn't really understand attachment disorder so read up when I got home and I am very upset to find that it's caused by insufficient attachment to primary caregiver, abuse or trauma before the age of 3. Have I understood this right? If so, it really doesn't fit as I was a totally devoted mother and did absolutely everything for DD spending her first 4 years as a SAHM. XH was abusive but she didn't see much of this as we didn't live together until she was older.

In any event, I still feel it's worth at least ruling out ASD via assessment but they seem hell bent on finding fault with my parenting. I have two other DC with no issues except one has dyslexia and the other very likely dyspraxia which are apparently associated conditions. ASD also runs in my family. DD also has hypermobility which I've read is another associated condition.

What do I do when they simply do not take my concerns or opinion seriously? I am so sick and tired of being blamed for this . Or do they possibly have a point? Anyone any experience on this and can advise please?

Afflictus - it sounds as though the CAMHS worker is pretty convinced that it's attachment, not ASD, and is trying to get you on board with this in a non-confrontational (and rather clumsy) way. As you have clearly read up on both ASD and attachment, it's understandable that you feel the lack of frank and in-depth discussion frustrating. He would be much better to go through his thinking with you in detail, and explain exactly why the thinks it is AD, not ASD and address your specific concerns. This is the respectful way to deal with concerned parents. Ideally, this discussion should be taking place with a psychiatrist or psychologist also present, as these are the professionals qualified to make such diagnoses.

Quite frankly though, an ASD assessment would be the easy route for this CAMHS worker, it is the path of least resistance. He could send your daughter for an ADOS, you as the parent would be satisfied, maybe the ADOS would indicate ASD, maybe it wouldn't (it's a crude tool) and you could be sent on your way. He clearly has a rationale for not doing this, so he must think there is very little evidence of ASD. It would be unethical to assess your child for a condition without sufficient justification, just as a doctor would not send you for an MRI without it being needed. They key is in the communication though - the CAMHS worker should be explaining this to you clearly, each step of the way, so that you understand the logic of his decisions and do not feel fobbed off or blamed, as you clearly do at present.

If you ultimately find yourself in a situation where you need an ASD assessment for the sake of your own peace of mind, you could always try asking Educational Psychology (it's a seperate service based in Local Authorty, not CAMHS, so they could offer a second opinion) or a private assessment is also an option if you have the means for this.

(sorry I didn't see your last post, about not affording to go private).
The help you are looking for is entirely reasonable, CAMHS should be equipped to help you with this, though seems like they need a nudge in the right direction. I strongly recommend you put this in writing for them and make it clear what support you are hoping for. I really wish you the best of luck with this.

The help you are looking for is entirely reasonable,

I do not mean to sound trite but I probably will. There are ASD traits in my family including at least one person who has a diagnosis. My parents read some books about how ASD manifests in girls and women and they found these helpful in the absence of any external input or external options to support them. Have you tried this? There are a number of memoirs now which explain what it is like to have sensory issues and so on by people who grew up with ASD A diagnosis does not have to exist at all if your DD does not meet whatever diagnostic thresholds are in place to be made by a professional in order for you to read some books and look for what helps you.

Similarly with AD there is a lovely book I read about this which I found helpful.

There is a gap between what CAMHS should do and what they do do. In the meantime see if you are able to take up options of support where they are offered. I am sorry that you feel as If CAMHS are not offering you what they ought to be offering. The blame thing is difficult and the thresholds for CAMHS support are high at the moment.

Yes, I think that perhaps an approach is to request ADOS for the alleviation of any doubt, particularly if they push an AD diagnosis.

Many here probably are commenting without much experience at cahms. Even with an 'easy' route for diagnosis, you still are always left feeling like your doing something wrong as a parent. It's a pretty shit feeling, especially since it is generally the parent whose brought up the issue in the first place.

Alternatively, you could start the EHCP process. Request a needs assessment and potentially get a more through review here? I'm going through this process now and it's bloody hard, but if you have a good team at school, it's likely you could get support. It's taken a lot to get the school to support me with dd9, but we are there now.

I think there's a massive underestimation of how much domestic abuse impacts even very small children. Attachment issues can arise when a parent is dangerous or frightening - your ex didn't need to be living with you for her to be impacted by an abusive relationship. At tiny baby stage relationships are instinctive development based on safe, predictable routines which are hard to maintain when you're in an abusuve relationship - and hard to maintain calm confidence, which small children do pick up on.

In saying that, insecure attachment patterns are incredibly common and generally it Isn't a huge problem in and of itself - most people can predictably get their needs met to a good enough standard. Whether the problem started as a parenting issue or not, it is one now. Therapy of any kind will only go so far in helping your DD - your parenting style needs to continue to adapt as you have been doing. It might be worth looking at books aimed at adoptive parents - they are very focussed on attachment and therapeutic parenting. Dan Hughes is particularly good in terms of explaining behaviours and ways to handle behaviours where children are distressed or disturbed. It may not fill all of the gap but might give you pointers in how to support your child.

I don't know if you're in counselling yourself but I'd certainly consider it if you're not.

Afflictus, CAHMS do not do ASD assessment. ASD falls under the category of Development Disorders which is different to Mental Health. Only a Pediatrician can give an assessment of ASD.

Unfortunately, there is a national lack of community paediatricians in this country, which means that it can take quite some time to get an appointment, let alone follow-ups appointment to reach an assessment.

As such, it is common to eliminate the possibility of an mental health issue before considering ASD, especially if the presentation of symptoms are more akin of MH than developmental.

Reaching a diagnosis with such presentation of behaviour is difficult and reaching the wrong one could be more harmful than helpful, hence coming up with 'theories' rather than a definitive diagnosis.

Understandably, you are very frustrated with the situation. I would expect that the circumstances with your OH is not helping and maybe unconsciously, you are awaiting for a diagnosis of ASD so that you can evidence to your partner that your DD's behaviour is not her fault or yours and therefore hope that he could accept her better, which could then mean saving your relationship.

Unfortunately, you are only at the start of a long process. Starting with a MH assessment. As you've said, you are only into 2/3 sessions of 8. The worker is bringing up some possible diagnosis but won't reach a final conclusion until the end. It is at this point that he will want to with you the next step.

The more expectant you are of an outcome, the more they will communicate with you in a defensive way. It is really hard on you, the frustration must be overwhelming, but you need to work with the team and try to be patient.

I wish you good luck and hope that there will be a light at the end of the tunnel soon.

swingofthings I have two dds diagnosed with ASD. Their diagnosis has not been made by paediatricians. Your post does not tally with experiences in my borough. Though I know children under 5 may see a pead as part of their diagnosis.

From my time in SN MN, many people do not see a pead for diagnosis.

Haven't got much time to post but just wanted to say thanks for replying everyone.

Just briefly, in my area, CAMHS tier 3 do the assessments for ASD. I have been to my GP about alternative routes to assessment and was told there isn't one.

swingofthings, this has nothing to do with my exDP. I've already made the decision not to continue the relationship and I actually feel ok about that.

CAHMS do ASD and ADHD assessment here too. I think I saw paediatricians when DD was 4 but since 10 it's been CAMHS who diagnose. I would advise documenting anything of concern with the camhs duty team, so its all documented with them as opposed to only at meetings as it sounds like your worker has made their mind up.

OP I really feel for you. I think if it's support your after then maybe repost in special needs.

However if I was you I would do the following:

• ask the camhs worker in a non confrontational way what there qualifications are. It may reassure you.
• try and raise with them how your actually feeling, you don't believe it's ad and you want her assessing for asd. And ask in each meeting when can we move forward with an asd assessment. You have to be tenacious and upfront to get support. The squeeky wheel gets the oil so to speak.
• you come across as very defensive about the current suggestion of ad and that's clouding you from asking people the questions and hearing the answers you need to. Are you receiving mh support?

this has nothing to do with my exDP. I've already made the decision not to continue the relationship and I actually feel ok about that.

The stuff with your exDP may or may not have affected your DD, whether or not exDP is in the picture at the moment and whatever age your DD was at the time. This is where your exDP is relevant to the entire exchange. Continually saying that this has nothing to do with your exDP may be doing your DD a disservice.

erinaceus, the pp was referring to another post I started before this one. My exDP and I recently separated for several reasons relating to DD's behaviour. I have been asking for assessment for ASD for a couple of years now so this is no way related to me needing to prove anything to my ex. I have realised he has issues stemming from his own step childhood and so will never be able to behave rationally over this situation, regardless of what is causing the issues.

Just to be clear, I am not saying it isn't AD but I don't think they can be sure it isn't ASD iyswim. I would like her to be assessed for both of necessary. However, as a pp pointed out, AD cannot be diagnosed unless there was neglect or abuse before the age of three (it's in the assessment criteria) so a diagnosis would be a direct indictment of my parenting and there was no abuse or neglect, I was a devoted mother.

But OP that doesn't necessarily mean the issue stems from your parenting it could be from her fathers lack of parenting

You said your relationship was abusive, how old was she when he became abusive?

Op my advise would be claim dla for your dd, put AD as the diagnosis as that what camhs have said - it's only a dla form not her medical records. Also dla awards are based on symptoms not diagnosis.
Emphasis your dd extra care needs relative to another child her age and that she is a danger to herself.
From what you have said she will be awarded middle rate £55 a week or high rate if you are up in the night with her if she is at risk of harming herself then, that is £82 a week.
Save the money until you have £900 plus travel cost to London . About 2 months before you will have saved up enough dla money book a appointment withDaphne Keen. She works at St George's and has a clinic on Harley street. You can google her.
The NHS will accept her private diagnosis.

Then you will know whether it is ad , asd or something else.

- ask the camhs worker in a non confrontational way what there qualifications are.

I wouldn't do that because I can't think of a non-confrontational way to do it, not to come across as challenging his qualifications and status. Any ideas?

- try and raise with them how your actually feeling, you don't believe it's ad and you want her assessing for asd. And ask in each meeting when can we move forward with an asd assessment. You have to be tenacious and upfront to get support. The squeeky wheel gets the oil so to speak.

Yes to raising feelings and being tenacious and a squeaky wheel, but no to saying you don't believe it's AD because that might put their backs up and encourage them to ignore everything else you say.

And don't mention girls presenting differently - that has to be raised by them first if it gets raised at all. It's not universally accepted and you'd risk looking like an ASC-diagnosis-chaser or an amateur playing the expert.

You might play the daft lassie instead, let him be the expert and ask him questions - is it possible for someone to have an AD and an ASC? How would you find out? Say that you would like to know for sure if she has an ASC apart from any attachment issues. And persist that the school has started to say she has social skills problems too. How would DD get help for that? And so on.

Does CAMHS as an 'organization' operate differently across the UK?

It varies all over the place, different health authorities organise things in very different ways. Which makes it very hard to give concrete advice on MunsNet about "how things work".

AD isn't caused by lack of attachment to one parent, it's caused by severe neglect and no attachment to anyone, this is why authorities are fairly keen to remove babies as soon as possible from neglectful/chaotic/abusive situations, so that they can form an attachment with a primary carer.

There's a lot of misunderstandings surrounding ASD and AD.

@kleinzeit

I would go with something like, I'm putting together a file on professional opinions on dd do you mind if I ask what your qualifications and background are? Not confrontational but clear that you are in control of what is happening.

Fair enough if you don't think OP should mention she doesn't think it's AD

As you've said, you are only into 2/3 sessions of 8. The worker is bringing up some possible diagnosis but won't reach a final conclusion until the end.

Doesn't we are both in agreement that she presents more as an attachment disorder mean that he has already pretty much reached his conclusion? Or am I misunderstanding the jargon?

Do you have a receptionist at your CAMHS? Why don't you ask them what the title and position is of the person you see as you didn't catch I when you started and feel too embarrassed to ask now?

Do you need a letter to explain DDs future school absence for these sessions? That may have their details on it. It would be sensible to have one for your files anyway to show a paper trail of assessment and professional involvement.

If none of these are possible just politely say at the beginning of the session that you didn't catch what these sessions were e.g.: family therapy etc and what their specialism is

It is poor professional etiquette that they didn't make this clear at the beginning.

Actually, google their name and LA, it should come up.

Isn't it the raison d'être of CAMHS to blame the parents? That's what I've heard from parents who've had dealings with them. Fortunately in my area Community Paediatrics assess for ASD.

you could always try asking Educational Psychology (it's a seperate service based in Local Authorty, not CAMHS, so they could offer a second opinion)

They could make a case and ask CAMHS to look again but (in my area at least) educational psychologists don't diagnose ASCs.