Developmental Disabilities - Science topic

The review found that parents of children with disabilities experience higher levels of stress than parents of typically developing children. The review also found that parenting interventions can be effective in reducing stress and improving parenting skills

As you mentioned, Autism is a spectrum and that is key here. Some people autism are verbal, some are not. Autism is not correlated with decreased intelligence quotient though behaviors can reveal developmental milestones that have not been mastered. PECS boards are absolutely necessary for nonverbal autism, starting at a young age. It provides these children and adults a way to mand “ask for” what they need out of a list of necessary daily activities and preferred activities. It negates problem behavior that results from that person’s inability to communicate on their own behalf. Providing a PECS board will not of itself instill development of verbal communication, that is a different behavior protocol, in the case you are asking if a PECS board will present you an individual with autism who communicates and acts more like the status quo. PECS are tailored to the the individual, as are all therapeutic efforts. if implemented correctly (successfully non-aversive) it WILL enhance preexisting/enable new communication skills that will decrease problem behaviors that result from unmet needs and I infer, frustration and stress. I have seen pediatric clients show a significant decrease in SIB and aggression once PECS boards are added to their treatment plan. Parents must be on board with the protocol and have a full understanding of the full access a student needs to the PECS board at all times. My data shows increases in SIB and physical aggression when PECS boards are misplaced or left at home.

Hi Thanks for this- I managed to contact ersearch gate and they resolved it. Have a good day

Yes, Applied Behavior Analysis is an appropriate way to educate individuals with developmental disabilities, and I offer you this useful link:

https://online.regiscollege.edu/blog/special-education-teachers-can-benefit-masters-applied-behavior-analysis/

Please see the following RG links.

Just to say that there is now no need fro a strict hierarchy with random effcets multilevel models. You can cross classifiactions and multiple memebership wich can take account of individuals being nested in more than one setting and spending different amonts of time in them

I am currently seeing a boy diagnosed with Autism and Fragile X. We have found Applied Behavior Analysis to be very effective. In terms of family adjustment, this has been a challenge and dealing with the challenging behaviors has been difficult as well.

Dear Noud,

You can use the DEFINE command to create parcels within MPlus. 

For example with three items:

DEFINE:

parcel1 = (item1 + item2 + item3)/3

Than add this new variable in the USEVARIABLES ARE line behind all wihtim data set variables u use in your model and it should work.

Best

The Caregiver Strain Questionnaire paper is available on ResearchGate 

The presence of Mu waves on the EEG for Autism has been researched, but most kids are older kids; not early diagnose (less than 2 years) , and for Down syndrome you would have to found an specific pattern asides from the slowing of the EEG pattern, you would need a different wave on the Down syndrome patients, and that would need to be observed in all patients regarding of age; so first you would need to look for something on the living ones and then try to find out if there would be a way to do it on the unborn; but that would also be an invasive procedure to the mother until now.

Hi Rosie

This might be slightly off topic, but we recently conducted a study examining client, carer, and clinical psychologists' perceptions of barriers and facilitators to therapeutic change within an intellectual disability setting. Although our study did not look at quantitative consensus in relation to social competency, etc., the paper may be useful background reading for highlighting aspects of convergence and divergence between individuals with an ID, their carers, and the professionals involved with them.

Look for attributions of Moto Miyahara  Otago University Dunedin NZ

Concerning those symptoms, I agree about the epilepsy hypothesis. Actually I would suggest considering the possibility of a Landau-Kleffner syndrome.

There is some research regarding this topic. You can find it easily at Google Scholar. You can even have access to many of these publications:

Deonna, T. & Roulet-Perez, E. (2010). Early-onset acquired epileptic aphasia (Landau–Kleffner syndrome, LKS) and regressive autistic disorders with epileptic EEG abnormalities: The continuing debate. Brain and Development, 32(9), 746–752.

It is also available in Dutch: http://www.pearsonclinical.nl/bayley-3

I'd like to join others in saying "Yes" to your question, Ahmad.

Indeed depression is a universal phenomenon and there are subtypes of depression. However, from the perspective of multicultural psychotherapy and international/global psychology, there are differences in one’s symptom manifestations, cultural explanations, and impact of depression on oneself and one’s intimates, depending on one’s cultural identification, acculturation to the Western cultural worldviews, and diverse backgrounds (Falicov, 2014; McGoldrick et al., 2005; Sue & Sue, 2013).

In terms of treatment, there are also differences in one's expectations of the treatment goals, processes and relationship with the healer (Cheung, 2009; Hong & Ham, 2001).

DSM-5 has provided an excellent outline for cultural formulation (OCF) and Cultural Formulation Interview (CFI).

Yes, autistic children tested either had poor sulphate production, or poor sulphate transport. Sulphate deals with amines produced by the nervous system. Dietary amines and phenols are sulphated, and autistic children should not have too much amine or phenol in their diets. Relevant supplements are molybdenum, omega 3 fatty acids, and vitamins B2, B5 and B6. Poor sulphation in the gut may make it too permeable, in which case avoiding casein and gluten makes sense. Boron is excreted with vitamin B2, and so foods high in boron are best avoided. Often there have been many courses of antibiotics, and replenishing beneficial bacteria is relevant. Chlorella and vitamin C may help remove harmful minerals like mercury and aluminium.  Butter and coconut provide fatty acids to reduce gut permeability.

If possible, test plasma elements, red cell magnesium and functional B vitamins.

Relevant articles include:

Murch SH, MacDonald TT, Walker-Smith JA, Levin M, Lionetti P, Klein NJ. Disruption of sulphated  glycosaminoglycans in intestinal inflammation. Lancet 1993; 341: 711-4.

Waring RH, Klovrza LV. Sulphur metabolism in autism. J Nutritional & Environmental Medicine 2000; 10: 25-32.

Whiteley P, Shattock P. Biochemical aspects in autism spectrum disorders: updating the opioid-excess theory and presenting new opportunities for biomedical intervention. Expert Opin Ther Targets 2002; 6(2):175-183.

Harris RM, Waring RH. Dietary modulation of human platelet phenolsulphotransferase activity. Xenobiotica 1996; 26: 1241-7.

Moss M. Effects of Molybdenum on Pain and General Health: A Pilot Study. J Nutr Env Med 1995; 5: 55-61.

Moss M. Purines, Alcohol and Boron in the Diets of People with Chronic Digestive Problems. J Nutr Env Med 2001; 11: 23-32.

Moss M, Waring RH. The Plasma Cysteine/Sulphate Ratio: a Possible Clinical Biomarker. J Nutr Env Med 2003; 13(4): 215-229.

No. There is no scientific evidence that it can. This is yet another pseudoscientific "cure" for autism that gives false hope to vulnerable, desperate parents.

You can ask actual clinicians in the field, but based on my knowledge, the most commonly used measures in the US are ADOS and ADI. The Stanford Binet only measures IQ and thus doesn't really capture the whole ASD spectrum (as many people with ASD do not have an intellectual disability). It may be appropriate to test Intellectual disability in ASD but not as a measure of ASD severity since it does not tap into behavioral and social issues. 

Hello Vimal

I have no expertise relating to researching children's needs, but in your quest for appropriate research methods, I wondered if it might help to read articles that offer comparison between the different options:

Goulding, C. (2005). Grounded theory, ethnography and phenomenology. European Journal of Marketing, 39(3/4), 294-308 - a ResearchGate member - downloadable from her publications page:

The paper below is also available from the publications section of a ResearchGate member, Professor Michael David Myers:

Myers, M. D., & Avison, D. (1997). Qualitative research in information systems. Management Information Systems Quarterly, 21, 241-242.

Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36, 717-732 - also available from ResearchGate:

Creswell, J. W. (2013). Research design: Qualitative, quantitative, and mixed methods approaches. Sage publications - below is chapter one:

Thorne, S. (2000). Data analysis in qualitative research. Evidence Based Nursing, 3(3), 68-70.

Merriam, S. B. (2002). Introduction to qualitative research. Qualitative research in practice: Examples for discussion and analysis, 1, 1-17.

Best wishes

Mary

Indeed, that may be the way to go.  If you do not find a specific measure, you may used another one that comes close, just make sure the Chronbach Alpha is good and it has good reliability measures.

Check out Pubmed listing: http://www.ncbi.nlm.nih.gov/pubmed/22646082

You may also want to contact various ABA associations for posters and oral presentations and other library sources

Dear Bata

 Thank you very much. I shall see to getting it translated when possible. Yes N. E. Bank-Mikkelsen was marginalized. I understand it was because he only stated the normalization principle in terms of mere a mere right for people with handicap. Professionals apparently misunderstood the intentions. Therefor he had to explain what his original idea with the principle was. So he published this around 1971 - short after Nirje formulated his view on the matter. And I know they knew each other well.    

Thank you very much. Likewise to you. Happy New Year as well

Kind regards

Frederik

We just published our study about the use of apps in primary school: https://www.researchgate.net/publication/270280736_EXPERIENCES_WITH_IPADS_IN_PRIMARY_SCHOOL

maybe it helps

I have a new CPT program, a new one.  It is not so expensive as it is not commercial yet.  You can ask me for detail or read one of my paper describe the construction of the test.  The second paper describes a research when the test was used.

Lufi, D., & Fichman, N. (2012). The Development and Use of a Computerized Test, MATH-CPT, to Assess Attention. Perceptual and Motor Skills, 114, 59-74.

Lufi, D., Tzchishinky, O., & Hadar, S. (2011). Delaying school starting times by one hour: effects on attention level in adolescents. Journal of Clinical Sleep Medicine, 7, 138-143.

I am looking forward to hearing from you.

Dubi Lufi

Very important are the preoperative and postoperative neurorehabilitation program which started in intensive care unit.

I can refer you to a general quality of life scale, perhaps it could be useful for you.

Patients with Angelman syndrome (AS) symptoms harboring MECP2 mutations are classified as AS patients in the Online Mendelian Inheritance in Man /OMIM database of the U.S. National Center for Biotechnology Information (Phenotype MIM number 105830)

A couple of scales you could perhaps consider are the Glasgow Anxiety Scale for people with ID and the Anxiety, Depression and Mood Scale.  Links to validation papers below.

I believe that the Person Centered Planning literature may have some potential answers for you.  Whereas this process is focused on implementation of intervention programs for people with DD (rather than research), it emphasizes inclusion of the individual with the disability in the decision making process.  Although this is a much more stringent standard than that applied to research studies (especially non-invasive studies), there may be specific methods from that approach that you can use in developing your research protocol - if indeed your goal is to maximize the possibility of true assent in your research study. For example, in PCP one might consult in advance, with a caregiver about techniques that may help maximize attention during a meeting with the individual with DD.  Hope that helps!

Thought you might be interested in this blog

Downs syndrome represented in art;

.

And this fascinating journal article;

.

Regards,

Paul.

It occurs to me that you might find the material available on Beach Center website to be helpful in your work. http://www.beachcenter.org/families/family_research_toolkit.aspx

I'm thinking that any one of the assessment tools that Beach Center colleagues have developed and field tested might support you in your study.

Good luck! Parental satisfaction and/or client (i.e., student) satisfaction remains an 'under-studied' phenomenon.

 

 Washington DC school system has published a comprehensive document on the transition process: http://specialneedsplanning.net/wp-content/uploads/2011/07/Transition-Assessment-Toolkit.pdf

 

In Germany, most children with severe SEN are sent to special schools. We have recently investigated how these differences between the UK's (integrative) and Germany's (segregative) educational systems affect children's attainment chances and indeed early inlcusion in normal schools combined with special support seem to make a huge difference (paper under review). Both the UN and the EU are currently enforcing more inclusive schooling Germany.

Dear Beata,

While reflecting on many of these folk figures, especially mermaids and good-hearted giants and dwarfs, I am struck by the fact that small children are blind to what we adults call disabilities or deformities. Such children would break into tears if they were aware that their favorite story figures were somehow "deformed." Children think in terms of archetypes. Paul Bunyan is a "good guy." Therefore there can be nothing wrong with him.

Each year we have students with some disabilities. We have students using crutches, with leg amputated for various reasons; and students using wheel chairs. Classes with these students are purposely put on the ground floor. In the hostels, they are also placed in rooms on the ground floor. Their friends will make it a point to help them, so they manage quite well with the support of family and peers. Being quite a new college, the design is meant to facilitate disabled students.

Dear Beata, yes I observed same thing in my home country, But in my opinion nowadays for full intellectual peoples are difficult to take care on children and then what about those with disabilities. My suggestion is that we have to be very careful, calm, quiet, respectful, soft and smooth with those that have Intellectual disabilities, and never give them or command them to do such responsibilities. TQ

Off the top of my head, I would recommend Chapter 16, TEACHING READING, in the second volume of the American Psychological Association Handbook for ABA (Daly & Kupzyk, 2012). This chapter provides a great overview of a behavior analytic approach to reading. There are many references within the chapter that will provide a useful foundation for further searching specific to implementation with individuals with autism.

Lastly, you might benefit from searching more specific terms other than ABA. I would recommend you search within the Direct Instruction and Precision Teaching literature.

I hope this helps as a starting point since it doesn't really give you specifics to application of autism.

Another optional solution might be rescaling the results of different tests (done at different age ranges) into one scale, so that you can compare between them and look at the results longitudinally. I have done that with the Bayley and the Bruininks in my paper: Shafir et al., (2006) Effects of iron deficiency in infancy on patterns of motor development over time. Human Movement Science, 25(6), 821-838. (PMC1993818)

parents with an intellectual disability show that most parents can improve in one or more skills. Some mothers with intellectual disabilities have been taught to increase their demonstrations of affection, descriptive and reflective statements, stimulating conversations and behavior management skills. The subsequent increase in a parent's skills will lead to an overall improvement in their child's development and behavior.

Skinner was my great grand mentor (my doctoral advisor's advisor's colleague and mentor), and he was a psychologist who used almost his last breath to speak to the APA convention. I was there. Behavior analysis has always been an important thread in psychology, but represents only one approach to asking questions of and controlling nature. Behavior Analysis seems to have always - and still does - marginalize itself by asserting it has a unique (only) way to find the truth and disparaging other methodologies that may be much better suited to answering certain kinds of important questions. We know that inductive methods can show real functional relations in individuals, but what if we want to establish population level safety guidelines?

I would be very interested in this project - I work with adult with developmental disabilities (in NYC area), many of whom have been abused. There is very little to guide my work with these clients, espeically the ones who have more severe to profound disabilties. Traditional therapies do not work.

Not at all, u r welcome.