Can a child be diagnosed as on the ASD spectrum if they meet almost all the criteria?

[Aliceinboots]

My 3 yr old has severe speech delay, appears oblivious to other children, appears a lot of the time to be in a "world of her own" and is emotionally aloof.
She does not however have any issues with routines or rituals. In fact you can take her anywhere surrounded by anyone and she just does her own thing. There are no sensory problems or tantrums either.
Could it be that she still fits somewhere on the ASD spectrum or is it more likely she to have a more non-specific learning difficulty?
I realise only a paed can only answer this but ours seems clueless.
Can ASD present as just a communication and social disorder?
Any thoughts, theories, comparisions gratefully accepted.

Aliceinboots

Auditory Processing Disorder (APD)
you might like to have a look at
Medical Research Council Institute of Hearing Research Auditory Processing Disorder (APD)
Auditory Processing Disorder in the UK (APDUK)
my collection of UK APD links
CiteULike Group: Audiology and Auditory Processing Disorder - library
I hope this helps

Thank you so much dolfrog. I really appreciate you taking the time to post the links. I will study them all.
This is such a supportive forum. Very glad I found it.

Alice, the reason I suggested language disorder is because your daughter reminds me very much of my son. He is 3.5 years old and also has severe language delay. He plays very happily alongside other kids but like your dd likes to do his own thing rather than interact. He has a short attention span and poor concentration. He doesn't play particularly well and lacks imagination in his play. What is your dd play like?

He is currently under assessment of a paediatrician. The paed can't pin point yet what is wrong. Meanwhile 2 speech therapists have hinted asd whilst another speech therapist and an independent autism consultant have suggested APD.

I feel like I'm going mad! I think this has to be the worse part, the not knowing! I have been told that if it is a language disorder like APD that this can be treated with the right help.

Have you seen a paed yet?

Also meant to say Alice, I think that in order to get a dx of ASD
a child needs to display problems in all 3 areas of communication, social interaction and the obsessive routine/repetitive behaviour.

And i think that as with your dd, my son isn't bothered by routine or have obsessive behaviour so I think this is why they are struggling to establish exactly what the problem is with ds as it's not clear cut and all they can see probs with communication and social interaction and the speech delay.

And i think that as with your dd, my son isn't bothered by routine or have obsessive behaviour so I think this is why they are struggling to establish exactly what the problem is with ds as it's not clear cut and all they can see is probs with communication and social interaction and the speech delay. Haven't read the whole thread so not sure if anyone has already asked you whether you have had her hearing checked out?

Sleepyhorse, DD's play appears to me to be more like a 2 yr old's. Her concentration isn't brilliant and she isn't very good (or interested) in puzzles appropriate to her age. She does flit from activity to activity at nursery and whilst she isn't remotely interested in other children, neither is she bothered by their presence. She is not aggressive and is indifferent to children playing alongside her.
She doesn't have excessive tantrums and really is a generally happy, calm child who you really can take anywhere and she is comfortable. There are no sensory issues, obsessions or problems with routines.
Your son sounds a lot like my daughter.

Yes, DD's hearing has been checked out. She has passed all the "technical" stuff but refused to be engaged in the playing aspect of the test.
We have been seen by a Paed (who hinted at a "social communication disorder") and are due to return to see her next month to carry out a detailed history on DD.

Sleepyhorse and Aliceinboots

There are different types of issues being discussed here, ASD which is diagnosed by subjective observations of behavior or traits, and cognitive issues which have specific scientific diagnostic tests. Eventually research will provide sufficient understanding of the issues which combine and cause the multiple issues that make up ASDs.
Currently research has shown that 40% of those diagnosed as ASD have some degree of ADHD, or some form of Attention disorder, and Many of the ASD communication issues are related to the auditory cortex, the part of the brain that processes all the sound based information the brain receives, and currently some of these issues can be part of an Auditory Processing Disorder.
Currently these types of issues have no cure, but each individuals ability to understand the nature of their disability, and how they are best able to work around their disability can be beneficial, especially when others can help provide the support they need by also understanding these issues.

Another part of the problem is that different types of professional are required to assess and diagnose each of these different types of disability, which can sometimes be initially identified by the so called Professional All Rounders GPs, Paediatricians, Educational Psychologists, SALTs, etc who have a generalised of some specific issues, but do not have the specialist knowledge and or qualifications to diagnose the specific disability. What is really required is more Multi - Discipline Assessment Teams made up of the different types of medical professionals required to make an true realistic assessment and diagnosis, as opposed the current system by which you my see the correct type of professional or professionals first time around more by luck, then any professional judgement. The whole diagnostic process processing in the UK for these types of issues is a complete lottery, and professional EGOs can be the biggest problem.

So we as parents have to work our way through this assessment and diagnostic maize of professional incompetence, lack of government funding (which they intend to reduce even further) to get the help, support and understanding both children and adults who have these types of disability need. Which means that we parents have to do our own research and sometimes become better informed about the issues our children have to live with than the so called professionals who are supposed to be proving us with advice and support.

Sorry for the rant.

Dolfrog - wow you have made some really interesting and helpful points here. I feel so frustrated that nobody seems to know what is wrong with ds and it's quite worrying when you hear that the professionals sometimes get it wrong and give your child the wrong dx. So far I have been told it could be a touch of autism or language disorder or learning difficulty so just don't know what to think anymore. Yes I have done my research but Im not sure either. My main concern is to get him help right now and get him talking asap. From what I can gather the best form of therapy for him is ABA as that its not just grat for autism but also very effective for a child with learning difficulties so I have heard.

Alice - I have spoken to many mums on here but your daughter definitely sounds most like my son. How old is she? Please stay in touch as we may be able to help each other with tips and advice if we are going down the same route?

(Taking the point that girls present very differently to boys but here's my 2p worth. I've been very precise about language and terms for once so hopefully you can relate it to your own HCT)

DS is also 'atypical' and it was a long, hard fight to get any type of dx for him. Eventually he went through the Autism Diagnostic Observation Schedule (ADOS), which was run jointly by a Consultant Pead and SALT at the Community Child Health Centre of our local children's hospital - which everyone refers to as 'the communications unit'. It was a videoed play-based assessment which lasted around 2.5 hours.

The video is then analysed and marked. If the DC 'hits' enough of the markers, then there is an automatic diagnosis of ASD. If they don't, then they don't have an ASD dx - it is very cut and dried.

Because my DS didn't hit all the markers, he doesn't have ASD. He has a dx of 'Social Communication disorder or delay'. However, he was just under the threshold for many of the markers, so it is clear he isn't NT and many of the strategies for ASD are relevant and helpful to him. In fact, I sometimes describe him as ASD as a kind of short-hand, depending who I'm speaking to.

Because we'd had such a delay in dx and accessing help, the local Spectrum team were involved in supporting DS at nursery, however when his dx was not ASD they tried to wriggle out of that pretty quickly. Once he got to school he 'transferred' into visiting teacher support and most of his help is now school based, he has 5 hours additional support but is fairly mainstreamed.

So - in conclusion:
dx isn't always important, it depends how flexible your school and healthcare trust is.
Psychologists don't dx as ASD is 'medical' for want of a better word - they can refer and support in school and are usually the access point for further support (here in Scotland anyway) but to get a dx you have to push for a pead referral
Your DS may or may not be on the spectrum, but you can use techniques for children on the spectrum to support her.
School I can't comment on as the system is different in Scotland.

HTH and sorry its so long!

dol we have multi-disciplinary teams here but they are a nightmare for the simple reason that they haven't got their admin together, so contacting people and understanding what is available is totally on the parent's shoulders. It should be so much easier than it is and its assumed each parent has a detailed knowledge of the inner workings of the team as well

WilsonFrickett

The problem with ASD is that thye have not yet identified and defined the specific neurological / genetic deficits and disabilities that combine to cause the behavioral issues traits, or markers required for a diagnosis of ASD.

So those who do not have the behavior traits, markers for an ASD diagnosis need to have a diagnosis of the separate deficits / disorders which can combine to be the underlying causes of ASD. Currently this includes ADHD, APD, Specific Langauge Impairment (SLI), Scotopic Sensitivity Syndrome (SSS), Hyperlexia, Hypercusis, Pragmatic Language Impairment (PLI), Sensory Processing Disorder, and many more.
Each of these separate and different disabilities has different assessment and diagnostic procedures. And each will probably requires a specific type of multi discipline team depending on the diagnostic professional or professionals required to provide a clinical medical diagnosis, and the various types of support professionals required to assess the support requirements that the diagnosed problems may require.

So to follow the ideal multi discipline teams say for Dyslexia, would be.
Initial assessment: Audiologist to assess and auditory processing problems, Optometrist to assess any visual processing problems, psychiatrist to assess for any attention problems.
Next for say the follow up for suspected Auditory Processing Disorder: an audiologist to diagnose APD issues, a speech and language pathologist to assess how the diagnosed APD issues will affect speech and language development during a life time (including dyslexia), psychologist to assess the problems and support etc of living with APD on a life time basis. Each of the other two underlying cognitive cause of dyslexia will also require different multi discipline teams depending on the clinically diagnosed problems.
As yet ASD has not been broken into the various conditions that can combine or co exist to cause the behavioral traits or markers, but the conditions do exist individually or can co-exist in lesser multiples to cause markers or traits but not enough to result in an ASD diagnosis. Eventually when research provides technologies to provide the understanding of the causes of ASD or ASDs it will be possible to identify the specific cognitive causes and identify the most appropriate support options which related to each of the combining disabilities.

Obviously we are some way off from this ideal situation, but research is slowly getting there.

Could anyone recommend to me research/articles to read about girls with ASD? Not Asperger's (I know there is a good book on that, but my DD has language delay). Would be really grateful for any links/advice on girls and how ASD presents differently. Sorry, not meaning to hijack thread, but it was mentioned on here. Thank you.

Sleepyhorse, DD is 3 years and 2 months old. I would love to stay in touch as it would be helpful to compare notes. Does your son have a SENCO involved with his care at nursery?
Am still waiting to meet with ours who just happens to be the headteacher too so I'm not expecting her to have the time to be very hands on.

Grey24, anything by tony Atwood is great :)

lisad123, you mentioned earlier in the thread that girls on the ASD spectrum present very differently from boys. I am struggling to find any research about girls specifically.
Do you know how they present differently? Is it a reduction of tantrums and aggression?

Just bumping up.

I didn't see any signs of what I thought autism looked like when ds was 3. He was calm placid, in a world of his own, very limited communication (though did not know how limited as did not compare realistically with peers). He was dxd with autism on basis of above. I know it gets back to ideal world thinking, but it's not acceptable to wait for help until some conclusion is reached - apply for a statement yourself now and get the ball rolling. He is very sociable now but I think realistically after a certain point, if your child has SN, there is a tendency just to keep them in the box they were put in - which may explain the great differences in autistic children! Some children dxd with autism are very passive, some very active, some are non verbal, some are echolalic/over verbal etc . There isn't a water mark test that they all have

On the basis your son was diagnosed then I would assume my daughter could be too. Your son had no routines, rituals or tantrums? Neither does my daughter and she is very affectionate.
I didn't think I'd feel like this but the "not knowing" what is wrong is somehow worse than facing up to the possibility of a SN diagnosis.
I get so fustrated with the lack of interaction from my daughter when I should be accepting her problems.
Not sure howfar we'll get with the paed next month as se doesn't even want to see DD. Apparently we have to go on our own and answer hours of questions about her.

No, no routines,rituals or tantrums - it is more a case of looking at what the child does not do than what they do. If the child does not communicate, interact or play at general age appropriate level then ASD is usually a prime consideration . It's very common unfortunately to be stuck in a slow moving chain of appointments that lead to nothing but another appointment in 6 months time. Applying for a statement now should put some of the control back in your hands - otherwise it's likely nothing will happen. You may get a dx eventually but you can't afford to waste time that could be spent getting help and therapy for your daughter

willowthecat

"which may explain the great differences in autistic children! Some children dxd with autism are very passive, some very active, some are non verbal, some are echolalic/over verbal etc . There isn't a water mark test that they all have"

The problem is that as you said there is no single scientific test to diagnose ASD it still relies on subjective observations of behavior, Traits or Markers, and these subjective observations are made by both parents and various types of professional. The reason for that is that as yet there is no full scientific understanding of the multiple issues which can combine to cause ASD, the various severities of each of these multiple issues which can cause the observed problems, and what alternative compensating strategies each individual is able to access to work around the deficits which cause the observed ASD problems.

So as frustrating as it may be for us parents and the professionals involved, it is a matter of wait and see until the age of maturation 6 - 7 years of age, when all children including those who have ASD issues stop growing out of natural developmental issues, and have begun to develop the alternative compensating abilities, if any, to work around their disabilities. There can be issues such as retained reflexes, as well. This means that understanding which therapy may help, which therapy will not help, and which therapy could cause harm can not be determined until this development has occurred. Especially in children who do not meet the full requirements of an ASD diagnosis.

"should put some of the control back in your hands" unfortunately nature can be very frustrating, and we do not have the levels of control we may desire, especially regarding early neurological development. We do not yet have the required scientific technology to fully understanding of all of these issues, neither the various types of professional we can be able to visit, nor the research scientists trying to find the answers. CiteULike Group: Autism - library 332 articles So we all have to use the incomplete information that is currently available, and wait for the various stages of development to occur so that we are best able to determine the best form of support and therapy etc which will help each individuals different needs, and match and assist the alternative compensating abilities they themselves have been able to develop.

I wasn't meaning that nature could be changed by nothing more than a human decision to take control and I'm not sure I implied such a thing. But I still think taking control of your child's education (to the extent possible) is better than waiting for a knight in shining armour to come and do it all for you - nice as that would be !

That is my issue with an ASD or some other label so early (aged 3) as developmentally children change so much at this young age.
It makes me nervous that the whole diagnostic process seems so wishy washy and subject to a group of medical professionals opinions. That's all they are, opinions.
How can some kids (especially in the States) be effectively diagnosed under 2 yet others don't ever get a diagnosis or are half way through their education when they finally get it?
It all seems really flaky and unreliable, especially for cases like my DD who doesn't have a typical presentation.

willowthecat

Recognising the existance of a problem is as far as some issue can go at this point in time we do not have the full scientific understanding of the issues that can cause these problems, which in turn means we are not really able to provide the real answers or solutions as to what the best way forward is. So yes we need all to recognise the existence of the problems, especially in relation to education, but the human development system does not mature until the ages of 6 - 8 years of age, so until that age any problems can be grown out of as part of natural development, as we all develop different skills and abilities at different ages and different rates. And it is only after this stage of development that a diagnosis of a specific disability can be clinically provided. If there is a family history, the genetic link, of these types of problems then and earlier assessment and diagnosis may be possible. So you need to identify the learning difficulties your child may have, which until the age 7-8 may be a natural developmental issue, but would become a clinically diagnosable SEN issue after that age.

Aliceinboots The observable traits of ASD are the issue which can be assessed and diagnosed from 2 - 3 years old, especially in the more severe cases. But the individual issues which can combine to be the multiple issues which can cause ASD can not be diagnosed until the age of maturation as mentioned above. So the only thing which can be assessed or diangosed at the age of 2 - 3 years of age are the potential behavioral traits or markers of ASD, not the acutla neurological issues which could cause these behavioral traits, which is waht you would be seeking diagnose if you do not get an ASD diagnosis. So you would have to wait like other parents of children who do not have the multiple issue that can cause ASD but still have disabilities which require SEN support, until they have reached the age of maturation.

There is another issue here which is the age at which formal education starts, in most advanced countries formal education does not begin until the age of 7 - 8, when children have been able to develop all of their natural skills and abilities, and some of the alternative skills and abilities they may need to work around any skill and ability deficits, they may have. So the education system in the UK discriminated against late developers and those who may need to develop some coping strategies to work around an information processing deficit. So we begin the formal education way too early in the UK.

Aliceinboots re the question answering, it is quite time consuming but vital as the professionals can't dx from what they can observe alone - they simply can't observe enough behaviour in the time available or even if they did have more time they wouldn't see what you see at home so they need your input too. They also ask about the birth and the pregnancy because they might have an impact. It isn't enough to see your DD.

To avoid it being one long depressing exercise in all that was wrong, before I went I did a list of features (for want of a better word) both good and bad about my DS and we went through this too. It kept in mind for me and the professionals that he is a whole person not just a list of differences or problems and actually stopped me feeling so sad about it all.

Don't worry on picking up a label too soon. You are more likely not to get one at all and just get a referral to come back in 6 months or a year rather than a label that is inappropriate. Because of the implications they don't hand them out easily. With milder ASD and probaby the milder end of most disorders the doctors will wait if they think that the problems are just behaviours a child will grow out of. They were not keen on giving a label before DS was 5 for example. We started the dx process off when he was still 3 (it took 18 months all together).

Just as an aside on Dolfrog's comments I think the most exciting potential development in the dx of ASD's is the ability to dx from a brain scan. They have discovered that the same area of the brain reacts differently in people with ASD to NT people. It is still early days in seeing how universal the difference is but it would be so much easier if you scan the brain to see if somebody had a particular condition, in the same way that Alzheimer's is diagnosed by looking at behaviour and scans together already. Not only would it make the process quicker but it would be less subjective.

I suspect an implication of this is that there might be people who have an incorrect dx. I think that sometimes the ASD tag is given because it is something that most people have heard of and because it means that they don't have to do too much investigation to unpick the behaviours if there are other things going on too. I reckon it is sometimes a case of, 'we know something is wrong and it could be conditions X, Y or Z, but differentiating between them is too hard so we won't bother'. Because of the subjective nature of the dx this might be right or wrong but mostly it may not matter so long as it leads to the individual getting the help they need. A brain scan would stop this mislabelling and also allow for an earlier dx too I should think.