[Barksum]

Could you share what tests are used to make a diagnosis of RAD?

My son was diagnosed with RAD. My DH and I believe that this diagnosis is not correct, as we do not see the behaviors that are usually associated with RAD. The assessment team that gave us this diagnosis did not do psychiatric screenings, nor did they use any formal evaluation specifically designed for RAD. The diagnosis was given after our son's early history was discussed and some observation during the administration of occupational therapy testing, and reading through the OT questionaire that I filled out. I believe that their diagnosis was reached because DS was neglected during the first year of life, was adopted at age 2, tends to try to control situations where he is not comfortable, has dysfunction of sensory integration, is easily frustrated, and due to my statement regarding his lack of giving hugs.

We were told that RAD and ARND were "the same thing" because they are both neuordevelopmental disorders resulting in abnormal behaviors. (I know, I know, red flag for me, too! Does this mean that autism and learning disabilities are the same too? Grrr.) The team did not evaluate for alcohol related neurodevelopmental disorders because we did not have a document signed by his biological mother stating when and how much she drank during pregnancy.

Our pediatrician said that this was a "catch all diagnosis". He has supported our pursuit of sensory integration therapy and parenting techniques used for children with brain dysfunction, ie: ARND.

Our son does play appropriate to his developmental level, is affectionate with our family, appropriately cautious of strangers, not obsessed with gore, fire, or tormenting weaker beings. He is careful with our pets, wants and tries to follow the rules, etc. He is kind to his younger brother, and even asks to help with his little brother's care. He does not mutter or talk incessantly, does not lie habitually, doesn't steal, nor does he engage in the behaviors usually associated with RAD.

I did tell the team that our son doesn't hug us much, but I failed to expound on that. He has difficulty with planning and initiating some kinds of actions. He hugs more now because we've been working with him on that specific action by giving cues that make it possible for him to go forward. However, he is affectionate with us in other ways on a very consistent basis: wants to be held, crawls in bed with us when he wakes early in the a.m., climbs into laps to be read to, holds hands when we go for walks, sits on our laps and snuggles when we watch TV, bed time routines involve snuggles and kisses, etc. He is not stiff, nor does he seek to get away from us.

Sorry this has gotten so long, but wanted you to have some idea of why we disagree with the diagnosis and that we have given due consideration to the issue.

[louise]

and God forbid you would use my opinion for anything other than an opinion!

A couple of things...

You already know my feelings about labels, boxes, diagnoses du jour etc., etc.

I think, instead of seeking more and other opinions, at this point, you need to trust your own feelings and trust that you will not sell your son short. You are doing a great job. He has a wonderful family. He *will* endure.

Please, don't miss out on his joys and experiences. Enjoy your son!

[Barksum]

I probably should have posted WHY I wanted the names of the tests for RAD. (Duh!)

DH and I are going forward and trusting ourselves to know our son. He has made and continues to make progress. He's a happy little boy with many endearing qualities. Yes, he has a couple of areas where he needs some extra help, but the overall picture of our son is happy, fun to be with, ALL boy.

The reason I wanted to know the names of the tests was because I am writing to the clinic where DS was evaluated. I want a letter in his medical records there that discusses why we disagree with the diagnosis so that it will be on file. I plan to send a copy to our pediatrician, our child therapist and to the other program that we work with so that in all the medical records where his evaluation is on file there will also be my (DH's and my) letter that points out another perspective.

We aren't doing anything else as far as evaluations are concerned, other than to continue with OT and to also, when he's a bit older, have a neuro psych eval done. All of these will be toward ongoing education for DH and I so that we can parent him well.

I have learned alot through this process. I now know that I can trust myself. Particularly to know my own children and what is right for them. Sounds silly, but I really had placed an inappropriate amount of trust in the professionals around us. DH and I initially felt that we'd made a HUGE mistake in going to the children's clinic and having DS evaluated. I wouldn't do it again, and I'm a bit concerned about the label that was slapped on DS and the impact that will have in the future, but I learned some invaluable lessons so it wasn't a total waste. Just mostly a waste. I know what I'm willing to have done with and for my children; and, perhaps more importantly, what I'm NOT willing to have done with my children.

Thanks for the post, Louise.

[Barksum]

I know that the clinic where we went DIDN'T use tests specifically to screen for RAD. I wanted to have in his file that we have "...done some research and have found that there are tests designed to give a better picture from which to make diagnoses of RAD..." and basically, in a nice way, I plan to let them know that since they did not consider the whole picture they really shouldn't have given him a label. They should have said, "We recommend that you explore these areas with specialists in these fields to make a specific diagnosis since we aren't equipped to determine precisely what is of greatest difficulty for him." Instead they didn't have a clear idea from their screening, so they gave him the label that was handiest (label du jour). I mean, I've read the DSM IV. It just doesn't fit with the child WE see.

[Stormy]

Barki, I have been following your story particularly closely as we are in a similar boat with our 4 year old as you know. To those of you who don't, our 4 year old bio. son has been diagnosed with PDD (autism). we aren't sold on the diagnosis, but are able now to get the OT and treatment along with more extensive evlauations now to determine what his needs are. Which brings me to my suggestion for you Barki, or rather maybe comment because I don't know what the treatments for your son would be. I understand (and may be mistaken) that children with ARND require some physical therapy, Occupational therapy, Sensory intergration and the list goes on deteminate by their needs.
My understanding of the treatment for RAD is that the treatment is a little different (i have very close friends who have a teen with RAD). I know the closest thing to OT or PT they do is bio feedback. The other things are more behavior modification oriented (and these are working for HIM but may not with many children with RAD I know). Anyway, my point, with a diagnosis of RAD, are they suggesting therapys that will help him be on target educationally or physically and socially. After having a diagnosis of PDD that I don't really agree with it has allowed me to realize that the treatment of such a diagnosis is intensive and he will be getting lots of help to be mainstreamed and be on target educationally and socially. Maybe if you went further with diagnosis (I know that is the last think in the world you want to do) you would gain a diagnosis that is more accurate and would allow you to gain access to treatment. I have had to discover for myself a label doesn't mean a whole lot. It is the treatment that is important. It is getting the help that has been the priority for us. And because school and school type activities (story time, etc.) have been impossible for our son, we are thrilled to have the opportunity to develop an IEP that will require the school to help him in his problem areas rather than punish him.

Good luck, I so hope you find direction in all this. I know how lonely it is trying to find answers and help for your child. I am there with you! Do you know of any centers who will diagnose ARNd on the basis of symptoms and characteristics rather than an admission by the birth mother. I have a friend who has a child with obvious FAS and she doesn't have a diagnosis because of that same problem. Or maybe there is a more related diagnosis where the treatment would be the same and yet you could be realistic that it is ARND but on insurance forms it would be diffined by the related diagnosis.

[Barksum]

If we had just left it with not agreeing with the RAD diagnosis we'd just be dead in the water, so to speak. However, we have pursued finding out more about FASD, which is what we believed the problem to be all along.

We researched RAD and attachment problems, but that didn't really line up with the behaviors we were seeing. We looked into Asperger's (high functioning autism) because so many of the symptoms that were similar to what we were seeing, but it didn't quite fit. We looked into "just" ADD/ADHD and found that THAT didn't quite fit, either. At this point I was beginning to feel like Goldilocks! Some of the symptoms and behaviors of each of the labels we looked into would fit, but it didn't quite line up correctly for the whole picture.

I went back to reading adoption books and the material that we had on hand and looked closely at FASD (fetal alcohol spectrum disorders) and felt that what we really had was, in fact, a child with prenatal exposure to alcohol who was dealing with some form of related brain impairment. I researched his casefile and found some documentation that his bio mom had consumed alcohol during pregnancy (Bio mom claimed six months sobriety when DS was around a year old). I contacted DS's former cw, who confirmed that PEA was HIGHLY probable. DS's bio dad also said that bio mom drank during pregnancy. Bingo!

This was all BEFORE we went to the children's clinic. When we went to the clinic and they said "RAD, no question" I was taken aback. I went back, read the DSM IV on RAD, and it STILL didn't fit with what DH and I knew to be going on. We have a child struggling to follow the rules and being frustrated because he keeps "messing up" -- he'd start out to do what he was told, but could never get it done AND he was upset and frustrated because he knew he wasn't doing it "right". This doesn't line up with RAD, where a child works to make sure that you know HE knows the rules and is CHOOSING not to follow them. Well, the list goes on and I've shared some of it in the first post on this thread.

The clinic told us that they couldn't determine FAE without written documentation from the biological mother. I have since found out that this is not accurate information. Perhaps in their paradigm of child assessment this isn't possible, but in reality (oops, that sarcasm is slipping through) it IS possible. Ok, giving the clinic the benefit of the doubt, even if I can't prove beyond a shadow of a doubt that DS had ARND, at least I can document and "prove" that he has neurodevelopmental impairment, cause unknown.

This is the key that DH and I have run with. Since we know that DS has some form of neuro impairment, we went to a program that provides assessments, training and individualized "game plans" for working with children with neuro impairments. This just happens to be a program for children with fetal alcohol.

So even if we toss the label aside, they're addressing the problems that we see with our child and that's what we want. This program could provide help and support to parents with children who have autism, PDD-NOS, ADD/ADHD, etc., because those are all neurodevelopmental disorders and that is the main consideration of this program. The brain is functioning differently, what can we do to help this individual and their family learn to cope. Thus the idea is "trying differently rather than harder".

For us this has started with OT for the SI stuff, taking small steps with what we already know and making adjustments in how we the parents view what is going on. We know that DS has and extremely good long term visual memory. Long term, as in he remembers accurately events from 3 of his 5 years. We also know that he tends to be pretty concrete. We're working on it, but he is still pretty, well, concrete! LOL He is a visual, kinesthetic learner. Oy vey!

So since we know DS is visual, we've purchased a Polaroid and are making up photos for him to use to get things done. Like buckling up every time we get into the car. We are hoping that with visual and concrete reminders he will be better equipped to move through daily routines.

[SB8]

Barki,

Boy, does that sound like us! None of the symptoms exactly fit my son until I started reading about FAS/FAE. My daughter seems to have more symptoms of RAD but I believe she suffers from FAE also. My son I believe suffers from FAE.

My question is this. I have looked all over the web but have not found a good source for what type of treatments are available for FAE. You mention OT for SI. What treatments is the OT using?

How do you go about developing a plan to address all of the symptoms? My son is dyslexic, has short term memory issues, is also a visual learner, has low frustration tolerance, has emotional regulation issues, has some SI issues, is slightly hyper at times, but is extremely affectionate. He does not have the behavior issues that my daughter has ie. lying, impulsiveness, etc.

Did you find one person to deal with all of the issues? Or are you on your own with several professionals trying to address all of the different issues?

In the same boat......

[Dr. Art]

Dear Barki,

First off, ARND and RAD are definately not the same. RAD is a developmental disorder caused by a history of CHRONIC maltreatment during the first two to three years of life.

Second, the only reason to engage in differential diagnosis is IF the treatments are different. In this instance that is definately the case since the effective treatment for RAD is attachment-based therapy. Behavior modification programs, reward/punishement programs, family therapy, play therapies, etc are INEFFECTIVE with children who have RAD (see my website for a follow-up study supporting this point).

Third, you really should get you child evaluated by a licensed menta health professional whose practice is largely adopted and foster children. Such a professional will be aware of all the issues and difficulties such children can have and be able to differentially diagnose and make appropriate treatment recommendations and referrals. In my clinic, as part of an evaluation, we evaluate a child for FAS and related conditions, other mental health issues (such as ADD, Autism Spectrum Disorders), Sensory-Integration Disorders (screening), Specific learning and neurological disorders (screening), and Attachment Disorders. You can find someone in your region at www.attach.org. I'd strongly urge you to do so as such a person will be able to evaluate, screen, and make appropriate referals as indicated.

Now, on to your primary question, How do we evaluate for RAD?
To do so takes a combination of clinical judgement and the use of some tests. There are not really any definitative tests, per se. To evaluate a child for RAD we consider the history; there must be a history of chronic maltreatment (abuse, neglect, institutional care...or in some instances, chronic untreated painful illnesses in the first two years or long term placement in a NICU). We look at current behaviors, (many children with RAD are not violent or destructive, they are often superficial, have limited ability to engage in an affectively attuned relationship, and appear compliant and "good" but are actually empty of genuine affect), ability to give and receive affection, ability to use the parents as a secure based (ala Dr. Mary Ainsworth as described in the Strange Situtation Protocol, which we use for infants and toddlers), capacity of authentic affective attunement, etc. We have a clinical interview with the child in which we look at the child's behavior with us and the child's responses to minor stresses and the child's ability to be honest and handle shame. I use the House-Tree-Person projective test and sometimes the CAT. We have the parents complete the Child Behavior Checklist (children with RAD typically have multiple scale elevations and fit the tests categories for a number of diagnoses that are unrelated..recall that children with RAD are often misdiagnosed with ADD, ODD, etc). We also use the Randolph Attachment Disorder Questionnaire. For teens we use the MAPI. We also have the parents complete a couple of narratives for us.

In summary, we look for a history of chronic maltreatment, behaviors, and the results of the projective tests, CBCL, and RADQ.

Regards,

[Barksum]

Dr. Art: we are working with our child therapist, as well as a program for FASD. We are having a hard time with insurances and stuff, but continue to plud along. Our experience with the child psychiatrist was neither pleasant, helpful nor informative. I'm a little burned, so am being very cautious about what professionals we expose ourselves to.

Have gone to the Attach site with mixed results. There are few therapists in our area, and the ones we looked at are not covered by our insurance. Normally I'm a "hang the insurance, we'll do what we need to" kind of person but we are having financial strictures that prevent me from doing many of the things I would wish.

Thanks for the listing of tests that you consider. Neither the tests you listed, nor any other specifically geared toward looking at attchment were done in our case, which concerned me. I'm also concerned about a diganosis reached so hastily without particular screenings before a label is attached. That and a team who could tell me, in all seriousness, that ARND and RAD were "the same thing", etc. Thus the caution and distrust.... ANYWAY, we have another meeting soon with our therapist, who knows foster/adoptive issues, and, just as importantly, knows US. We'll go over all the evals that we've had done in the last two months and discuss what we all really think is going on and the best plan for treatment.

For Sue B.:
We have contacted Diane with FASCETS. http://www.fascets.org She has helped us coordinate with the OT and will eventually help us meet with the neuro psych. (DS needs to be a bit older to do some of the neuro psych evaluations.) She may be able to help you find someone wherever you are to help you with what you are dealing with.

I'm not sure which has been most helpful: the new perspective of what is going on, or the Sensory Integration information. They both kind of go hand in hand. The new perspective let us know that "traditional", learning theory based parenting probably would not work -- may in fact make things more exasperating for both DS and DH and I. Good to know since we were getting worn down with trying to implement rules and consequences and not having them work. I had just assumed that I wasn't a good enough parent, so it was nice to realize that I was being as consistent as I thought I was and it wasn't my fault that it wasn't working. (Can you tell I was getting a bit depressed at my inability to adequately anticipate and parent my DS's needs? LOL)
The SI has started to give us a picture of WHAT approaches might work when teaching DS and also HOW to apply them.


For us this means a rich Sensory Diet, (See the book, "The Out of Sync Child Has Fun" or a web site for SI.); giving directions in one-step increments; etc etc for 3 pages of material. Email me privately and I can talk with you about it. (barksum@hotmail.com) The OT gave us lots of cautions about secondary symptoms that come from constant frustrations and aggrivations and how to work to avoid those issues (rages, depression, avoidence, "shutting down", et al).

[ladyjubilee]

OK, I'm stumped. I keep reading where insurance won't cover certain providers.....which is true on most managed care, hmo and preferred provider organizations. HOWEVER, most plans include a clause that says that if no one in the network can provider that service the services may be covered out of network at the preferred level with prior approval. In the case of attachment therapists, if you can prove 1) that attachment therapy is significantly different from "regular" therapies and 2) no one in the network is qualified to do the attachment therapy, then it should be approved. Which leads me to wonder if the services couldn't be covered that your child needs---if you just formulate the appeal in words the insurance company would understand.

[Dr. Art]

I participate with several local, regional, and national managed care companies and have separate contracts for my therapy, Dyadic Developmental Psychotherapy. However, to be covered as an out of network provider is really hit or miss. Some companies, (United Behavioral Health, for example), will allow coverage, but many won't.

Best of luck

[Barksum]

Lady J has a point and I do plan to look into our insurance coverage with a stronger microscope.

However, I know that Oregon chose not to give the attachment treatment center in Washington state their nod of approval as far as the certifications that our state requires of mental health treatment centers. That is, Oregon said that the Washington center "failed" the process that Oregon uses for insuring quality care. This, of course, was the center that was recomended to us. This means that none of the medical cards issued for children in foster/adoptive placements will cover any treatments from this facility. At least this is the info that I was given as to why our insurance will not cover treatment from this facility.

I'm working on getting a list of who we can see, or finding out who knows this information. So far I've been told a lot of non-information. Like I need referrals. Yeah, so? Can I get a referral to anyone I want to? Well, no...you have to go through your therapist. Huh? So if I go through my therapist to get my referral (speaking very slowly so I won't confuse the person on the phone) THEN can I go anywhere I want to? Ummmm, well...you'll have to check with the therapist whom you see to find out what kind of coverage our insurance provides. WHAT?! I have to ask my therapist what my insurance company does.... It was just easier to say thank you and hang up at that point. I'm lost and confused, but that apparantly was the whole scheme that this insurance provider came up with when they gave out a phone number to call when you have coverage questions. LOL So I'm working with my therapist -- mostly to find new ways to convert the raging stress from speaking with incompetants on the telephone into something positive and productive -- but also to find out if SHE knows what the insurance company does/doesn't cover. She didn't seem sure about what I was talking about. Maybe if I spoke French or something.....

[aMarylandfamily]

A few years back we had a sibling group placed with us (here in MD) from OR which unfortunately disrupted when the girl's mental health needs required services beyond our ability and capability. At age 4 we could not obtain services even at the National Children's Hospital in DC as she was too young to meet/qualify for admission requirements - when it became a possibility that disruption was ahead, Oregon DSS advised our agency here to determine whether or not we would be willing to undertake RAD therapy at Colorado ... at their expense - from an account other than regular foster/adoption stipends ... so you might want to ask what they are willing to provide. Not believing the cause of her problems were RAD related we declined and proceeded with the disruption - the foster mom went through the therapy with her there though ... with no results of any kind - this little girl is now in RTC (three years later) attempting to learn behavior control over what may be DID ... so you never know - and to make my rambling have sense - ask OR what they can do to modify assistance - it may get you a big NO but if you don't ask you won't know for sure.

Take care.

[ladyjubilee]

Barksum,

If the place you want to be referred to isn't licensed, then it just isn't going to happen. So that would be the first hurdle. The next would be obtaining the referral. In this case, the therapist needs to make the determination that 1) he/she can't do the service, 1) what service is needed and 3) who can do it. As far as what would be covered, that is kind of up to the therapist---because that person is medical staff and the insurance company isn't. Some things aren't generally covered--but if there is medical (mental health) reasons for it, it might be. So the easiest thing, is just to see if your therapist will refer to the type of provider you need.....then when you discover there isn't a provider of the type in the network just get an out of network referral (which would probably have to be apprioaved in advance.)