Attachment Disorder

[MrsD]

Hi all,

 

I'm new to this board, posted on meet and greet recently.

 

I have twins (boy & girl), almost 3 years old. I know my son has ASD, the Consultant agrees with this and so does the Psychologist.

 

I was told today that Portage disagrees with ASD and they say it's Attachment Disorder! I am mad to say the least.

 

Surely Attachment Disorder would not involve these autistic traits which my son has:

 

Hand flapping

Obsession with lights

Obsession with spinning toys, spins himself in crawl position and even objects which aren't meant for spinning i.e. telephone

Obsession with shapes

'Draws' circles in air with his finger

Pulling (leading) me everywhere, placing my hand on his toys

 

There are obviously other symptoms he presents but I suppose these could be explained by Attachment Order?

 

Global Development Delay

Very poor limited speech

Lack of eye contact

Not responding to name as if deaf (hearing checked and ok)

Having no fear of anything!

 

Unfortunately I have been stressed and anxious since my twins have been born. This is due to lack of support and my son having difficulties since he was born (started with poor feeding), then global development delay. I now feel they are trying to put the blame on me.

 

Any advice would be greatly received!

 

Dee

Edited June 11, 2009 by MrsD

[baddad]

Unless things have changed in the past few years Portage doesn't have anything to do with diagnosis(?)

Portage when we had it was pre-school skills development, and though some of the volunteers/staff were quite knowledgable none were qualified to diagnose and they didn't have any real input to the diagnostic process...

The person who will make a diagnosis (in my area at least though it varies depending on local expertise/knowledge/resources) would be the consultant paediatrician...

 

Hope that's helpful

 

L&P

 

BD

[MrsD]

Thanks BD.

 

At our last consultant appointment, the consultant informed us that she had spoken with Portage and had put the suggested diagnosis of ASD to them. They disagreed. She obviously wanted their opinion. She's a locum consultant, and has only seen my son on 2 occasions.

 

Dee

Edited June 11, 2009 by MrsD

[Kazzen161]

http://www.oaasis.co.uk/Free_Publications_6/All_Publications

 

has an information sheet on attachment disorder.

 

Portage might be able to make suggestions, but it is down to the consultant/paed/psychiatrist to make a diagnosis.

 

 

[Tally]

It would be very unusual to have one twin with attachment disorder and the other developing normally.

[Sally44]

You really don't need this extra hassle do you.

I have no experience of knowledge of portage. But if others have said they cannot diagnose then that is the case.

Although there maybe some similarities eg. avoidance of eye contact, there are many other behaviours, some you have listed that are more associated with ASD.

Also if the child also has language and social communication difficulties and inflexibility of play/thought and a need for rigid routines coupled with sensory issues as well that is pointing towards an ASD.

If I were you I would insist on a multi disciplinary team assessment by professionals that are experienced in diagnosising autism and aspergers. If you contact the National Autistic Society they should be able to give you advice about some of the centres in your area that diagnose. They have many helplines, including a parent to parent line which can be very valuable support. Autism is now more common, so most areas have a centre or multi disciplinary team that specialises in diagnosing children or adults with ASDs. Ask the consultant to refer you to them.

You've also posted about your other twin as well. So you could also raise your concerns about them and ask that both of them are assessed. Then whatever the diagnosis I would expect Portage to follow that diagnosis and offer appropriate supports. Although your children are around 3(?) the fact that both of them are showing autistic tendencies in different areas and in different ways would seem to back up a ASD diagnosis rather than something else.

It is also usual for those with an ASD to also have anxiety due to difficulties understanding language, social interaction, change etc. It is also usual for them to have difficulties with emotions whether that is recognising it in themselves or in others. For many years my son only spoke to request something he needed, and even then, if he could get it himself without involving me he would do that. It has only been later and with intensive speech therapy that his communication has really come on. To someone who did not have expertise in autism that behaviour could have been interpreted as being ambivilent.

Are there any other things your children do such as unusual tone of voice or intonation. Do they repeat words or phrases back to you or repeat things you recognise from TV or DVDs?

Do you have anyone else in the wider family with an ASD? There is some evidence of a genetic link, although there are other possible causes as well.

[MrsD]

Thank you to all who have replied.

 

Sally - Yes, langauge & social communication difficulties and inflexibility of play/thought + sensory issues. I wouldn't say he has rigid routines but he gets upset when changing tasks. Intonations yes and he has just recently started copying phrases, even though he has no idea what they mean! I believe it's called echolia? That's interesting what you say about phoning the NAS and asking for details on centres that diagnose ASD. I will phone, thanks very much.

 

Dee

x

[Sally44]

If your child gets upset changing tasks this is called 'transitions'. It basically means moving from one topic to another, or one environment to another. Children with ASDs can have difficulties 'starting' something, or 'stopping' something or both. So when my son was younger (3+) typically, if I asked my son to turn off the TV and come and look at a book he would get very upset and throw a tantrum. Sometimes he even vomited on reflex because he got so distressed, and that went on for years.

When he became verbal and I asked him to do something he would immediately say 'no' and get upset. Then if I said 'okay' he would capitulate and get upset that I wasn't going to let him do the thing he had originally refused to do!! Then once he was doing the thing, and I wanted him to stop, we would go through the whole process again of getting distressed. Everything became a battle and sometimes it was easier just to let him do what he wanted to do and occupy himself. But to some extent you can also use that. If they are interested in something and totally focused on it you can join in with them and teach them just as much through their interest rather than trying to stop them to do something we have planned for them.

We have just learnt to make it very clear the time frame of things. My son has no understanding of time. Some children have very acute understanding of time.

For example I have stopped putting the TV on at breakfast time because my son gets too distressed at having to turn off the TV, especially if it is halfway through a programme, when it is time to go to school. So we have found that no TV causes less upset. If he has the TV on we use a 'time timer' supplied by our autism outreach teacher or we make it clear that it is just this one film or programme. This visually shows him how long he will be watching TV for. We try to plan things so that we turn the TV off at the end of the programme. Now he is 8 he is more able to turn the TV off half way, especially if I fully explain to him what will happen if he doesn't turn it off, eg. he will miss his fencing club.

If any of your children are repeating TV/DVD dialogue this is called 'echolalia' as you have said. It can be immediate repetition or it can be delayed. My son started with some immediate echolalia. This developed to delayed echolalia where he was speaking and it sounded spontaneous but he was actually putting together 'sound bites' from different TV programmes to say what he wanted to say. So it was rather like a verbal jigsaw puzzle. So if he was angry with me he might say 'I'm going to send you to Timbuktu' - that is from the Aristocats movie. He also talks with an American accent picked up off the TV. He also has an unusual intonation and places the emphasis on the wrong part of a word or sentence. He actually speaks English like a foreigner! But these are all pointers at a speech disorder associated with an Autistic Spectrum Disorder, and it also indicates a learning style to learn things in 'chunks' and not in an analytical way.

To some extent all young children use echolalia. But then they switch to analytical speech where they learn the meaning of each single word and begin to ask lots of questions. Children with echolalia remain at the stage where they 'hear' a word or sentence and get an understanding of what the 'whole' thing meant, and they use it again in other circumstances. Some children may just repeat the phrases and it is not relevant to what is being said or done at the time. Other children are definately using it appropriately and to outsiders their language sounds just a bit odd or eccentric. But even children who says inappropriate things maybe using echolalia to take turns in conversation. For example you may say something to your child. They understand that it is now their turn to say something but they don't know enough language to retrieve the right words and put them in the right order and form a sentence that makes sense. Instead they answer with something from TV.

Out of interest, do they also have problems with pro-nouns eg. mixing up or not understanding when to use 'I, my, you, him, her, she, he, them, us' etc?

I have already said about sensory issues and learning styles. And it is a similar thing to the echolalia. In echolalia the child does not have enough language to use their own words, so they use something already seen and heard and try to use that instead. With some sensory behaviours like being rigid with a colour of cup, the child has made sense of the 'cup' and maybe it belonging to them and has associated the colour as also being important to the item and what it represents and so they use the colour, or the item as an important part of the experience and one which helps them make sense of many things that happen throughout their day. So they may insist on saying words before doing the act, or insist on 'leaving the house' means having to turn left and not right etc.

Many of these thought processes can be gradually explained and taught to children using visual symbols and visual timetables and keeping language simple but explaining what makes the experience 'the same' and what makes it 'different'.

For example, a while ago, I took my son to a supermarket cafe for something to eat. He wanted chicken nuggets. The woman said 'they aren't called chicken nuggets anymore they are called chicken chunks. Straight away he is anxious and getting upset - but still managing to hold it together! So he says 'okay i'll have fish fingers'. And the woman says 'they're not called fish fingers anymore they are called fish nuggets'. At that stage all hell broke loose and he was lying on the floor kicking and screaming. Why. Because he did not recognise the words used for the food he wanted. He could not understand that chicken nuggets and chicken chunks are similar words and a similar food. It made the food unrecognisable to him. Then the same thing happened with the fish fingers. When the food finally came, and he was calm again I talked with him about how it was similar.

Now he will try totally new things because was have talked through how we try to make a good choice, and what we do if we don't like our choice. If you don't have a good understanding of language or cannot predict outcomes that is a hard task to do.

Anyway, this post is far too long! And i'm just rambling now.

But I just wanted to finish by saying that all our children do make progress. When he was 3+ he was saying very few words. Then he began reciting whole DVD dialogues. Today he has been chatting all day long to the extent that I asked him to be quiet for a while! He was asking me questions about eyes and why isn't it like looking down binoculars with our eyes because our eyes are two circles so how do we get a full field of vision. I can't even answer alot of the questions he has nowadays!

[Mum of 3]

Hi all,

 

I'm new to this board, posted on meet and greet recently.

 

I have twins (boy & girl), almost 3 years old. I know my son has ASD, the Consultant agrees with this and so does the Psychologist.

 

I was told today that Portage disagrees with ASD and they say it's Attachment Disorder! I am mad to say the least.

 

Surely Attachment Disorder would not involve these autistic traits which my son has:

 

Hand flapping

Obsession with lights

Obsession with spinning toys, spins himself in crawl position and even objects which aren't meant for spinning i.e. telephone

Obsession with shapes

'Draws' circles in air with his finger

Pulling (leading) me everywhere, placing my hand on his toys

 

There are obviously other symptoms he presents but I suppose these could be explained by Attachment Order?

 

Global Development Delay

Very poor limited speech

Lack of eye contact

Not responding to name as if deaf (hearing checked and ok)

Having no fear of anything!

 

Unfortunately I have been stressed and anxious since my twins have been born. This is due to lack of support and my son having difficulties since he was born (started with poor feeding), then global development delay. I now feel they are trying to put the blame on me.

 

Any advice would be greatly received!

 

Dee

 

Dee, I really feel for you...It's a great Catch 22, isn't it? You have twins (most new mums are shell-shocked with one baby to cope with!), and one (at least!) is very difficult to deal with...this combines to make you feel stressed and anxious...so your son's problems are put down to you having problems 'attaching'!!! I think 'attachment disorder' is just too much of an easy answer.

I've come across children born to drug addicts, children born into war-torn countries, whose families have been ripped apart, children whose mothers are exhausted and depressed by having huge families, often against their will (or at least their better judgement!)...these children have had some behaviour problems...been a bit fiesty sometimes...but they displayed nothing like what I've seen my son display. I had a therapist suggest to me a while ago that G had attachment disorder, and I'd never heard of it. When I researched it I was furious that she'd suggested it. I felt she was laying the blame on me with no good evidence or reason. Needless to say, we didn't go back to her.

Obviously, I want the correct diagnosis for my DS, so we can get the right help, and if, after a multi-agency assessment, they come back and say it's attachment disorder, I'll take a deep breath, accept it, and get help. Just like I will for any dx. But I do object to people who are supposed to be supporting and helping giving a snap dx which makes us feel even more guilty than we do already!

I thought portage was meant to be help and support for you? If it's not supportive, it's not helpful. My advice is to wait for the professionals to give their considered opinion, and try to ignore the snap decisions made by unqualified people.

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[MrsD]

Dear Mum of 3,

 

Your post was really helpful. I agree with what you have said completely. Thanks very much.

 

Dee

xx

[baddad]

I thought portage was meant to be help and support for you? If it's not supportive, it's not helpful. My advice is to wait for the professionals to give their considered opinion, and try to ignore the snap decisions made by unqualified people.

<'>

 

Hi Mum of 3/ Mrs D -

 

Please don't thnk the following refers to either of you directly - it doesn't - and I totally agree about ignoring snap decisions made by unqualified people...

I did, though, want to comment on/qualify the middle paragraph of the above, because 'support' can mean different things under different circumstances, and sometimes that can be quite challenging for the person being offered support...

In my own post I meant to italicise the 'some' when I wrote about portage staff being knowledgable, and in any event I don't think it's appropriate for them to be giving unsolicited and inappropriate (in terms of their 'status' and role) views about diagnosis, but I do think support sometimes involves telling parents/carers things thay may not want to hear. That should always be done tactfully and considerately, but again that will often depend on interpretation, and if someone has a big investment in their views any comment that challenges them may be considered tactless and inconsiderate.

 

Hope that's helpful, and as I said none of the above is a comment on this specific situation - just general observations about the nature of the 'supporters' role.

 

L&P

 

BD

 

[Mum of 3]

Hi Mum of 3/ Mrs D -

 

 

I did, though, want to comment on/qualify the middle paragraph of the above, because 'support' can mean different things under different circumstances, and sometimes that can be quite challenging for the person being offered support...

L&P

 

BD

 

I agree, BD...sometimes, people in a supportive role need to take on the role of a 'critical friend'.

 

However, when I said that 'if it's not supportive, it's not helpful', I was refering to the fact that the portage worker has gone to a mother stretched to the limit of her resources, dealing with not one (which most people find hard enough!), but two toddlers, and one of those with suspected ASD, going through Dx/assessment, which is as we all, I think, acknowledge, extremely stressful...In my opinion, Mrs D has enough to deal with, and, at this time in her children's lives, needs good, solid, practical advice and help, not judgement.

 

At this moment, if she's anything like me ( ), she'll be reeling from all the punches life has thrown at her in such a short space of time...a time which you look forward to as a lovely, cozy, happy time of baby groups and walks in the park, which somehow turns sour, and becomes a nightmare of visits to doctors, psychologists, etc, with every aspect of family life turned into a battle ground...walking on eggshells all the time and constantly trying to find ways to position situations so that they will be accepted and your child will just do it without a fuss....

There is not a day goes by, nor has there been for the last 3 years, when I have not looked to myself and searched every aspect of my dealings with Gabriel to find out what on earth I've done that was so wrong. I've become anxious, depressed, unsure of myself and defeated by life...

 

When you find yourself in a place such as this, and you seek support (or 'help', which is certainly how I would look at it if Portage had been offered to me!), the last thing you expect is for that 'support' to be making unqualified diagnoses and influencing the professionals who are there to make the qualified diagnosis.

 

To be honest, it was the suggestion of 'attachment disorder' that really struck a chord with me. The cicumstances that Mrs D finds herself in are extreem (as mine were, with 3 children under 4, the eldest of whom was displaying all sorts of uncontrolable behaviours!). Our house has been a madhouse (not in a fun way!) for years, and my two littlies have grown up in that environment...it's all they know...anyone who came into this house without having met me before, or in another situation (such as at work, where I'm capable, calm, in control, etc), would see a neurotic mad-woman who can't even brush her hair in a morning, running round in circles with kids pulling at her from all directions...In order to find the head-space to even put the kettle on, let alone engage in conversation, I have to send all the children to another part of the house! They wouldn't see much of the cuddles, love and affection that each child does get, because those times are usually snatched at bed time or early mornings...during the day it's all just too crazy!

 

Take that into account, remember that I've done everything in my power to engage with my darling boy, and could not, in all conscience, have loved him more or shown him how much I loved him more...and then read this, from Wikipaedia...

 

Quote:

Attachment disorder is a broad term intended to describe disorders of mood, behavior, and social relationships arising from a failure to form normal attachments to primary care giving figures in early childhood, resulting in problematic social expectations and behaviors. Such a failure would result from unusual early experiences of neglect, abuse, abrupt separation from caregivers after about six months but before about three years, frequent change of caregivers or excessive numbers of caregivers, or lack of caregiver responsiveness to child communicative efforts.

Ouch!

So, when these people come and 'suggest' that our children have 'attachment disorder'. they are actually saying that we've neglected them, abused them or been so unresponsive to their communicative efforts that they've just given up. This was a term, I believe, that was invented to describe the state the Romanian Orphans were in when they were found.

Now, maybe, you can see why it enrages me so much that someone could, after spending a couple of hours in my home, offer this diagnosis.

 

It is NOT a term that should be used without a full investigation having taken place, and from what Mrs D posted, the Portage Worker had not undertaken an investigation into the family, but had merely offered this term as a suggested DX.

 

Mrs D...

I apologise wholeheartedly for hijacking your thread and 'going off on one'...Also, if it seems as though I've been 'speaking for you', that is not my intention. Your situation has really struck a chord with me...it was about 18 months ago that the therapist said this to me (about AD), and I had no idea what on earth was wrong with G back then. I was desperate for answers, and blaming myself for everything, so her comment (once I'd researched what it meant!) just compounded all my fears that it was all my fault. It's taken me all this time to realise that I'm not the problem, but I am actually the solution, and the World looks alot more positive from this side of the fence!

[bid]

Horrible!

 

Sounds like the old 'refrigerator mother' under a new guise

 

Bid

[Mum of 3]

Horrible!

 

Sounds like the old 'refrigerator mother' under a new guise

 

Bid

 

 

Thanks, Bid...

All the time I was typing I had something running through my head about having heard this somewhere else...That's it! Yes, I think you're right. They've just found a new term for it. Now, it's a 'disorder', so it has that ring of respectability to it.

 

Mind you, it's always easier to blame it on the parents, isn't it? Even better, blame it on the mother...she probably won't even complain!

[bid]

Even better, blame it on the mother...she probably won't even complain!

 

The Head Teacher at my son's first primary school, where his special needs were first identified by staff, kindly told me his difficulties were because I had remarried and had another baby

 

That was 16 odd years ago, but it seems nothing much has changed...

 

Bid

[Mum of 3]

The Head Teacher at my son's first primary school, where his special needs were first identified by staff, kindly told me his difficulties were because I had remarried and had another baby

 

That was 16 odd years ago, but it seems nothing much has changed...

 

Bid

 

Well of course, Bid...how could you think otherwise!

 

Mine was because I had the audacity to have a miscarriage on the day of my husband's Mother's funeral...How selfish and inconsiderate of me

[MrsD]

Yes, I agree with you, much easier to blame it on the parents. I was raging last week when I heard about Attachment Disorder, I can tell you!

 

I wonder how many of you with ASD children have had comments from family/friends/health professionals (before diagnosis) who put your children's difficult behaviour down to parenting/home environment.

 

Anyway, GOOD NEWS in a way but also sad. Today was the Clinical Case Review for my son, the Consultant IS diagnosing ASD. Apparently the CARS form which the Child Psychologist completed, with my help, is quite significant in confirming the diagnosis. The Consultant and Child Psychologist always did think my son has ASD, I suppose this has confirmed it for them. They also said it would help him get the extra help he needs when he starts pre-school in September. He'll be 3 years old next week.

 

Dee

(A worried mum with a very recent diagnosed gorgeous ASD little boy)

x

[Mum of 3]

Anyway, GOOD NEWS in a way but also sad. Today was the Clinical Case Review for my son, the Consultant IS diagnosing ASD. Apparently the CARS form which the Child Psychologist completed, with my help, is quite significant in confirming the diagnosis. The Consultant and Child Psychologist always did think my son has ASD, I suppose this has confirmed it for them. They also said it would help him get the extra help he needs when he starts pre-school in September. He'll be 3 years old next week.

 

Dee

(A worried mum with a very recent diagnosed gorgeous ASD little boy)

x

 

I'm so glad you've finally got somewhere Dee, and you can put that woman's unkind, unwarrented comments behind you. Getting the diagnosis at such an early age will hopefully mean you can get all the help and support in place before he starts school. <'> <'> <'>