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?

ASD isn't bad parenting. The triad of impairments. Neurological. In my mind, it's a bit like electricity cables and some are not quite connected. That's only how I chose to picture it, I might add.

The theory of mind and empathy and imagination etc, all factors.

But that can't be just bad parenting?

We don't say cancer or epilepsy or diabetes is because of bad parenting.

But if someone thinks it IS because of bad parenting. And they are a HCP, then of course that is their opinion.

How often do we all think it is just bad parenting then?

Parents of autistic children have to jump through so many hoops to prove it's not them.

As well as dd2 having an asd diagnosis we are now starting again with dd6. It's exhausting, as I know it's not our parenting but family traits. Part of the reason I didn't push for dd2 to get a diagnosis again till she was 12 was because it had been blamed on the family situation. I couldn't deal with the fight again.

The only reason dd6 is being assessed is because of her other medical stuff (leukodystrophy,, developmental delays and heart issue). And I've developed a toughened exterior since going through it with dd2

What the heck is bad parenting anyway? If the professionals want to help it would be a lot more pertinent to say what they think the parent has done wrong and what they should be doing instead.

Not all children with asd have behaviour issues. Dd2 has no behaviour issues. She has trouble with social, communication and routines.

The fracture of the primary attachment relationship can be subtle. The most helpful thing that you can do for your daughter is accept that there is a problem and work with professionals.

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.

Why do you not agree?

The fact that you were close to your DD when these problems manifested does not mean that there are not issues around attachment. For one thing, the origins of your DD's troubles could be some years before her behaviour changed.

I don't know a huge amount about AD but my understanding is that there are different kinds, some (reactive AD) are due to early experiences, others are innate. The direct and indirect effects of her father's behaviour may have been a factor.

My DS has an ASC and didn't get much direct therapy. A lot of it was help for us as parents figuring out how to parent him - a bit differently from other kids in some ways, in other ways doing the mainstream stuff more carefully. He did get some social/communcation skills therapy, some anger management and attended therapeutic playschemes and friendship groups.

The sessions are dominated by him asking questions - there's no real room for me to talk about any of my wider concerns and if I go off topic from one of his questions, he is dismissive and moves onto his next question which very much have the feel of an overall agenda.

That is worrying. When DS was assessed DH and I were given plenty of room to air our own concerns and we were listened to.

It's possible for multiple difficulties to co-exist, people talk about "ruling out" conditions but it doesn't have to be either/or.

Can you ask for a second opinion?

Only if you've been through the fight can you know how Truely awful it is. It's isolating and soul destroying.

I wish I could be an advisor. Like Father Christmas. Helping 50 different parents each day.

To go with any parent who needed help, to the awful school meeting with Senco where they think it's bad parenting and secretly suspect Fii / munchausens.

Or what about all the battles trying to get your child properly assessed and EHC.

All the lies that get told and arse-covering.

I'll never ever forget the poster who was at the meeting/ in court - fighting for the old 'statement'.
everything was been denied and then she went to the toilet and the social worker/council worker, had left all the files for the last five years (which provided with all the evidence she needed) in the actual toilet!!!

but the whole thing is just frightening.

the corruption is frightening.

Only those who have been through it, know how bad it really is.

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.

For some parents that would feel like an "aha" - it would ring true as an explanation and be a helpful way to think of the dynamic and change it. But if it rings false, it rings false and it's not an interpretation of events that a CAMHS worker can reasonably impose on someone.

For asd and ad it might be helpful for you to read the NICE guidance as it is well written and simple.
As with some neurodevelopmental disorders they can often be linked to low birth weight or prematurity too.
In any case try not to beat yourself up and try and move on from this now you are out of the abusive relationship.

others are innate.

I do not agree. Attachment is done differently by different people but the responsibility for building healthy attachments lies with the primary caregivers. Parenting is hard. It is not surprising that attachment problems arise. Parents may feel blamed when professionals try to help with parenting skills, but parenting skills are not easy. The kid does not come with a manual.

I do not have any answers but if there are problems with attachment it is helpful to address those whether or not the child meets the diagnostic criteria for ASD, AD, both or neither.

'Bad parenting' is a very unhelpful way of thinking about any of this. Even if difficulties (not ASD) are linked to dynamics within the family- nobody wants to be a 'bad parent' any more than any child wants to be a 'bad child'. Most of us wouldn't say a child was just a bad child...

With developmental difficulties parents usually have to parent harder than for children without developmental difficulties. So it can be a harder job and it can be easier to feel like (and unfortunately seem like) a 'bad parent'.

However, if you forget whatever may or may not be the causes (which nobody knows anyway) the idea of the difference between how attachment disorder presents and ASD present are subtly different. Not everyone differentiates between the two and Im not sure what evidence there is for the differentiation. But it might be helpful to see the difference in traits/ responses as a way of understanding better any particular child's needs and then how to help them. For example differences in approaches to social relationships. Although I agree with others that on the whole the way you would for example take time and care to prepare a child with ASD for what is happening etc would be helpful for both presentations.

Im very sorry you feel blamed- that will not help anyone. AD and ASD (if differentiated) are very similar in presentation. It's a shame that the first makes parents feel even more blamed.

Also everyone thinking that kids just need an ADOS for diagnosis- is that most of your experience- ASD diagnosis based just on an ADOS?

Also CAMHS worker wanting to see you more often than your child does mean that they think its a parenting issue. They may want to talk to you about things openly to gain understanding, in a way that might be hard in front of your child.

They are all trying to help you, not 'blame' you. Might be both ASD and AD, so you could both be right. Either way it is not the dx that is important, as they change he names of these things every 5 minutes anyway, what matters is getting some help so she can have as happy a childhood as possible. If that means you can do things to help her I am sure that you would want to do them. Process of diagnosis by parental interviewinterrogation is, I agree, very stressful and I feel for you.

The person that I dealt with believes that whether asd or ad, the parents caused it by the care

He also does not believe in any innate mental health issues, developmental conditions or learning dis. It is all parenting. This man works for Cahms.

He also talks a lot about the negative relationship with his mother that is where his ideas come from. These maniacs actually work for cahms!

Can't you ask for them to explain why they believe it has somethi g to do with your parenting? Are they saying that the issue relates to how you were yourself feeling at the time but that your parenting skills are not helping dealing with her condition or are they saying that your parenting skills caused the issue?

Did you also post in step parenting saying that your partner was also questioning your parenting skills?

I think either way it is worth listening to their explanation on the basis that they are the experts before dismissing them fully. At the same time motherly gut feelings can be worth any expert advice.

Ours just said he went through similar with his mother and it is to do with attachment. He said he does not believe in autism as it is just poor attachment. He didnt just single us out, he believes it for every case.

We then had ados with someone who knows what they are doing and they said obviously autistic.

HelloKittyCats That is terrible. Do you have the energy to explain the situation to the service manager? This person's beliefs and their issues ought to be kept well away from the support being given to your child and to you.

Afflicticus if you're convinced it's ASD and not AD I have some suggestions for when you're with camhs. Do lots of reading up on aitism and then try to focus on the symptoms that are specific to ASD and not AD. You've already got the hypermobility diagnosis so how about focusing on: literal interpretations, not understanding metaphor etc. Sensory issues. Repetitive behaviours. Echolalia (brief echoing of the other person's words as they are speaking) . Intense/obsessive interests. Processing delay. Difficulty understanding abstract concepts. (Even in hfa this would still be an issue at 9). Write up a full list of examples; multiple instances of any you notice and hand it over. My second suggestion is to give very short answers to the AD related questions and under all circumstances do not attempt to defend your parenting. The fact that you seem desparate to defend your parenting makes it look like an attachment issue. For example when you said your 17 yr old son often tells you you're a great Mum implies you're either massively exaggerating in which case I would have to doubt your word or you ask him in which case you doubt your attachment or he spontaneously tells you in which case he doubts your attachment in order to feel he needs to do so to keep you close. You see how the more you say about your parenting the worse it will sound? I hope this helps

others are innate. ... I do not agree.

My point was that "attachment disorder" can mean different things in different places so what the OP read up might not be exactly what the CAMHS worker meant.

Parenting is hard. It is not surprising that attachment problems arise.

Being a professional is also hard and problems can arise in that too. I am sure they all mean well but a CAMHS worker who makes a mother feel that she is not being heard, who dismisses the concerns she raises and who tells her that "we" are "both" in agreement when she is not, is not doing a good job. That's insensitive at best.

The OP is right that he hasn't ruled an ASC. Diagnosis isn't a box-ticking exercise and it's not a job for a CAMHS worker either, it requires a multi-disciplinary assessment involving e.g. a developmental paediatritian, POTS (for the muscle issues), and SALT.

Afflictus you could question this - "I don't feel that all my concerns are being heard" is the kind of language that psych-types understand - and you could agree that your DD might have some attachment issues but you don't have to take a view on whether she has "an attachment disorder" or not as you are not an expert. You don't have to be fobbed off with just whatever label he finds most convenient and keep asking for other possible diagnosis to be fully investigated as well, to cover the other issues such as muscle tone or any oddities in her communication

Just x-posted with EnthusiasticEdna - I agree her approach sounds effective. Probably more effective than mine!