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Arti­cles on ABA/VB

A Perspective on Today’s ABA from Dr. Greg Hanley

To the original article by Dr. Greg Hanley, June 4, 2020

This is today’s ABA when star­ting therapy with an autistic person, espe­cially one who routi­nely engages in problem beha­vior. 

Today’s ABA (applied beha­vior analysis) is about conti­nu­ally lear­ning about the predilec­tions of the autistic person being served so that preferred lear­ning contexts can be deve­loped en route to deve­lo­ping skills that can be appre­ciated by the autistic person as well as others. What follows is a guide for those imple­men­ting today’s ABA but written for those who are curious about what today’s ABA involves.

Learn by listening.

Ask the autistic person and/or ask people who know and love the autistic person about what he/she/they loves and hates. Be sure to review the love, aver­sion, and indif­fe­rence towards acti­vi­ties, objects, furni­ture, contexts, and espe­cially social inter­ac­tions. Ask that person about the autistic person’s voice. How do they routi­nely commu­ni­cate? And, espe­cially, what are they commu­ni­ca­ting with their problem beha­vior? In other words, today’s ABA starts with asking ques­tions, listening, and lear­ning about the autistic person by people who know and love the autistic person.

Learn by crea­ting joy. 

From that conver­sa­tion, put toge­ther a context in which the autistic person will be happy, relaxed, and engaged, one in which they will feel safe and in control. Enrich this space with all of the objects and acti­vi­ties that they love. Don’t be stingy with the stuff–more is better. Be sure to include all the things that they have lost in the past because they could not handle their removal or because they engaged with them in unique, stig­ma­ti­zing, or disrup­tive ways.

Do not restrict in any way their freedom to do or move. Keep the door open. Follow their lead, physi­cally and conver­sa­tio­nally. Let the autistic person bring other mate­rials to this context, remove mate­rials in this context, repo­si­tion objects and people in this context, and essen­ti­ally rede­sign it with either their actions or words.

Be sure to create clear signals of your submis­sion (i.e., remove all signals of dominance—hovering too close or stan­ding above them). During this time, avoid all acts of redi­rec­tion, promp­ting, teaching, ques­tio­ning, and language expan­sion. Be 100% avail­able to the autistic person but do not add your “two-cents” to the situa­tion unless asked. Reserve even praise unless the autistic person initiates by sharing what they are doing or just did with you and you are authen­ti­cally impressed. Do not super­vise the expe­ri­ence; share in it without taking it over in any way.

Respond to all attempts to communicate–this will happen the sooner you stop trying to lead the situa­tion. Help them, for instance, not when they struggle, but when they indi­cate they would like assi­s­tance. Be earnest in your attempts to help even when you are not sure how to do so. Do not let any beha­vior towards you be ignored; react to their beha­vior in normal ways, just do not attempt inspire the next interaction—let them lead.

Continue revi­sing the context and your manner of inter­ac­tion until the autistic person does not want to be anywhere but there. Let them “vote with their feet.” Besides being digni­fying and avoiding regrett­able physical manage­ment, allowing them to leave the space provides good infor­ma­tion. Leaving means some­thing important is missing or some­thing aver­sive is present. Keep working on buil­ding and refi­ning the context until the autistic person is happy, relaxed, and engaged for an extended period. Reco­gnize that happy, relaxed, and engaged looks very diffe­rent for diffe­rent autistic persons, which is why it is essen­tial that someone who knows and loves the autistic person is present at this and the next step of the process.

In sum, teach the autistic person that you know them, you see them, you hear them, and you are there for them. This is the first and crucial step in today’s ABA.

Learn by empowe­ring.

After you are confi­dent that you can create a safe and enga­ging context and there is zero proba­bi­lity of any severe problem beha­vior in this context, it is time to empower the autistic person further and estab­lish trust between you and the autistic person. It starts by clearly signa­ling that the prevai­ling condi­tions are about to change, and for the worse, but be clear and kind about it. Through normal actions and words, make it clear to the autistic person that you would like them to stop what they are doing, set aside their mate­rials, move in a diffe­rent direc­tion, inhibit any self-stimu­la­tory beha­vior, and tran­si­tion to an area in which deve­lo­p­ment­ally appro­priate instruction/expectations will commence. Be sure this area of high expec­ta­tions is set aside to some extent and popu­lated with all the chal­len­ging acti­vi­ties and expec­ta­tions reported by those who know and love this autistic person as important for his/her/their deve­lo­p­ment.

If the autistic person shows any explicit sign of distress, discom­fort, or protest in the form of either minor or severe problem beha­vior while tran­si­tio­ning from essen­ti­ally their way to your way, acknow­ledge it immedia­tely and relent. Let the autistic person return to their way and resume following their lead until he/she/they gets back to their version of happy, relaxed, and engaged for a short period.

Repeat this process until it is obvious that the autistic person is empowered and under­stands that they do not need to comply against their will and they do not need to esca­late to escape or avoid the things they don’t want or obtain the things they do want. Teach them that you see them, hear them, and under­stand them even more now, despite the some­times lack of precision or general accep­ta­bi­lity of their commu­ni­ca­tion. Teach them to trust you. In this period, be clear, be alert, be quick, and be consis­tent. From this reset­ting of the rela­ti­onship, you will even­tually restore balance and be able rein­tro­duce the ambi­guity and chal­lenges of life without problem beha­vior retur­ning.

Learn while teaching.

The path to a joyous life­style for fami­lies with autistic persons is paved with skills. The big pavers are play/leisure skills, commu­ni­ca­tion, tole­ra­tion, and coope­ra­tion. Once these are set, the bran­ching paths are endless. Today’s ABA process conti­nues by repla­cing the beha­vior reve­aled in the empower­ment phase with an easier one that will be better received by others. The process involves gradu­ally intro­du­cing ambi­guity as to whether the new commu­ni­ca­tion skill will work and by stret­ching the periods of coope­ra­tion. The pace and aims of this treat­ment process are conti­nu­ally informed by feed­back provided by the autistic person, both in terms of what they say and do. Gone are the days of working through problem beha­vior and nega­tive emotional responses—those are indic­tors that the treat­ment process needs to be adjusted, and not at the team meeting, but at that moment.

This treat­ment process is one in which the star­ting point is a happy, relaxed, and engaged autistic person. The themes of I see you, I hear you, I under­stand you, and I am here for you persist throughout the entire process. It bears repea­ting that there is no obli­ga­tion to teach while children are upset in any way or under any duress. Hasty efforts at promo­ting compli­ance or deter­mi­ning the deve­lo­p­mental status of an autistic person are not cham­pioned in this process. That which is cham­pioned is estab­li­shing trust, enga­ge­ment, authen­ti­city, and agency. Coope­ra­tion in shared expe­ri­ences follows. Acknow­ledged in this process is that skills will be learned both during therapist‑, teacher‑, and parent-led times as well as during times in which the autistic person is leading. Also reco­gnized is the under­stan­ding that deve­lo­p­mental assess­ment is best under­taken once trust and persis­tence in diffi­cult tasks has been estab­lished.

Today’s ABA is trauma-informed. It is to be assumed that any person in the care of a beha­vior analyst for problem beha­vior has expe­ri­enced multiple adverse events, with many excee­ding the criteria for acknow­led­ging that trauma has been expe­ri­enced. By lear­ning through listening; by enri­ching thera­peutic contexts; by buil­ding and main­tai­ning trust; by following one’s lead; by relying on perso­na­lized contexts in which people are happy, relaxed, and engaged; by listening to commu­ni­ca­tion bids; by not working people through noncom­pli­ance or emotional duress; by allowing people to walk away; by making decisions based on perfor­mance; and by teaching from joy; today’s ABA is trauma-informed.

Final Reflec­tions

Our world, our country, and yes, our little field of ABA are at all at their own cross­roads. The time to recon­sider the status quo is now, whether it be as mundane as how to work in an office and socia­lize in restau­rants or as profound as dismant­ling systemic racism. Our issues in ABA are some­where in between but I daresay that our issues share chal­lenges asso­ciated with getting back to work in the midst of the coro­na­virus and addres­sing injus­tices for people of color, espe­cially black people in America. Let’s learn from others, espe­cially those expert in public health policy, human rights, and criminal justice as we make our way. But let us not wait any longer to get on the right side of history.

Ours is not to domi­nate but to de-esca­late or better yet prevent esca­la­tion in the first place. Ours is not to coerce (thank you Murray Sidman!) but to listen, learn, guide, and coach. Ours is not to redi­rect, restrain, or merely manage and modify. Ours is to under­stand, share, and shape. Ours is to prio­ri­tize safety, rapport, and the tele­vi­si­bi­lity of what we do above all else. We have proven that meaningful outcomes can follow when we prio­ri­tize these things (see www​.prac​ti​cal​func​tio​n​al​as​sess​ment​.com).

To those who do not know this as ABA or who down­right despise ABA: I hear you and I under­stand where the confu­sion or hatred comes from. I acknow­ledge that our field has been asso­ciated with wrongs on its journey of helping autistic people and members of under­served popu­la­tions (i.e., those with intel­lec­tual disa­bi­li­ties). Our collec­tive attempts at helping are better now than they were, and both rese­arch and prac­tice reveal to me that beha­vior analysts doing better is conti­nuing. I also reco­gnize that impro­ve­ment is not inevi­table just because we embrace a form of scien­tific method. Values-based move­ments have been displaced from ABA in the name of science for as long as ABA has been in exis­tence. This is a sad and uncom­for­table truth, but one within our power to address if we listen to the voices of dissent that have been margi­na­lized for too long.

ABA has the poten­tial to inflict trauma, and it has the poten­tial to alle­viate trauma. I don’t want to wait for some horrific inci­dent being recorded for funda­mental change to take place. I have been attemp­ting to correct my mistakes and improve the way I do ABA through rese­arch, authentic prac­tice, consul­ting, and espe­cially listening to other voices outside my choir for many years. I won’t make excuses for my beha­vior or that of other BCBAs. I simply apolo­gize. I apolo­gize for not doing more, saying more, pushing more, or disrup­ting more. Consider this a step in the direc­tion towards self-awareness, impro­ve­ment, trans­pa­rency, accoun­ta­bi­lity, and an obvious commit­ment to protec­ting the rights of those we serve. I hope you will join me on this quicke­ning walk towards a more perfect ABA to help fami­lies of autistic persons whose lives are nega­tively impacted by problem beha­vior.

* Thanks to Dr. Anthony Cammil­leri for his sugges­tions and encou­ra­ge­ment with respect to this paper.

Protecting children from sexual abuse

Most children will enjoy a happy child­hood, full of love, support and oppor­tu­nities for growth. Rela­ti­ons­hips with parents, siblings, the extended family and friends will help them develop necessary social skills to fulfill their need to be included in the commu­nity and excel with others.

Unfor­tu­n­a­tely, a few children will be exposed to nega­tive rela­ti­ons­hips, some of which can be extre­mely harmful. This docu­ment aims to increase awareness of sexu­ally abusive rela­tions and guide parents and profes­sio­nals on how to create safe envi­ron­ments for children to grow and interact safely.

Key Facts:

  • Some forms of sexual abuse include having inter­course with a child, touching a child’s geni­tals for sexual plea­sure or produ­cing porno­gra­phic images of children.
  • 1 in every 10 minors will suffer sexual abuse by the age of 18.
  • About 93% of victims suffer sexual abuse by someone known to them or their family.
  • About 82% of victims below the age of 18 are girls.
  • In 88% of sexual abuse cases, the perpe­trator is male.
  • Appro­xi­mately one third of perpe­tra­tors is an older child. In the remai­ning cases, the perpe­trator is an adult.
  • Children with disa­bi­li­ties and younger children who cannot yet commu­ni­cate with others are parti­cu­larly vulnerable.
  • Remember that if abuse occurs, the perpe­trator is to blame and not the child or yourself.

Guide­lines:

  • Sexual abuse is preven­table by crea­ting safe spaces and know­led­ge­able adults and by encou­ra­ging children to talk.
  • Ensure profes­sio­nals and parents are aware of guide­lines for safe­guar­ding children from sexual abuse.
  • Adopt an open door policy for class­rooms, therapy rooms and leisure acti­vi­ties.
  • Observe physical signs or changes in beha­vior or mood during daily routines that could indi­cate ongoing distress (e.g., marks around private parts, comp­lains about pain, reduced appe­tite, disturbed slee­ping pattern, unex­p­lained nervous­ness or crying, disturbed toile­ting habits, etc.).
  • Notice if your child seems to know or describes things that you would not expect them to know according to their age and deve­lo­p­mental stage (e.g., a pre-school child describing sexual acts).
  • Teach your child what kind of beha­vior is accep­table by others and how to calmly say “No”. For example, tell them who can see their private body parts (e.g., doctors) and inst­ruct them to say “No” to anyone else trying to touch them or asking them to touch their own body parts.
  • Children with disa­bi­li­ties are parti­cu­larly vulnerable and should be educated on healthy social rela­ti­ons­hips and sexua­lity. This includes trai­ning on basic life skills that increase their inde­pen­dence, such as toile­ting, dres­sing, bathing, naming body parts inclu­ding geni­tals, etc. This will reduce the amount of high risk situa­tions they are exposed at and increase their ability to commu­ni­cate any concerns to you.
  • Whenever there is one-to-one teaching involved in a setting, home, school or acti­vity clubs, we should have safe­guar­ding measures in place. Espe­cially high risk situa­tions, such as toilet, dres­sing, swim­ming and similar should involve two adults at all times. If staff resour­cing is an issue and you cannot have two adults present, adopt alter­na­tive measures: offer trai­ning, issue guide­lines for children safe­guar­ding, check adults’ criminal back­ground and profes­sional refe­rences, conduct frequent random checks and super­vi­sion of acti­vi­ties, adopt one-way mirrors in one-to-one work rooms, film sessions.
  • Parents should be allowed to watch educa­tional sessions frequently and whenever this is not possible, alter­na­tive means of trai­ning them and protec­ting children should be in place (e.g., film videos that can later on be examined toge­ther with parents).
  • Teach children to say “No” in a calm way and respect their wishes. Children should be able to make choices that are propor­tio­nate to their deve­lo­p­mental level and in their own benefit. For example, they should be able to choose not to kiss or hug a rela­tive and shake hands instead. Keep expec­ta­tions for achie­ve­ment and main­tain a struc­ture that helps kids to develop auto­no­mously but keep these expec­ta­tions in a balance with indi­vi­dual auto­nomy and the fact that children have chan­ging needs and the right to choose. Educa­tors should not expect or teach full compli­ance to any child; they should instead seek to develop every child’s full poten­tial by respec­ting their prefe­rences and adop­ting evidence-based prac­tices. Read the bene­fits of offe­ring choice at https://link.springer.com/article/10.1007/s40489-018–00154‑7
  • Risk assess­ments should be conducted by schools and after­school clubs (or parents, when profes­sio­nals are employed at home) and children safe­guar­ding measures should be put in place. Ask your child’s school about such guide­lines and if they do not have a policy, share the present docu­ment with them.

Resources:

Down­load the article as PDF
PDF download 

Created by Dr Kate­rina Dounavi

Psycho­lo­gist (EuroPsy), Beha­vior Analyst (BCBA‑D)

Applied Behavior analysis: The scientific base of an increasingly popular intervention for children with autism
Towards true multidisciplinarity

3 November 2014

Kate­rina Dounavi explains how beha­viour analysis can feed multi­di­sci­pli­nary work.

Multi­di­sci­pli­na­rity is regarded as a crucial part of educa­tional (and clinical) assess­ment and inter­ven­tion. But colla­bo­ra­tive work by cross-disci­pli­nary teams calls for a solid scien­tific base which permits mutual under­stan­ding, concep­tual cohe­rence, and consis­tent appli­ca­tions and evalua­tions of outcomes. Without this common ground, profes­sio­nals coming from diffe­rent back­grounds might end up adop­ting a mixture of conflic­ting and inco­he­rent approa­ches which are coun­ter­pro­duc­tive for those they are trying to help. The evidence from condi­tions such as Autism Spec­trum Disorder (ASD) and other special educa­tional needs suggests that most, if not all, effec­tive inter­ven­tions are beha­vioural in nature. This leads us to think that Applied Beha­viour Analysis (ABA), the applied branch of the science of beha­viour analysis, may well serve as the solid basis required for produc­tive cross-disci­pline work that enhances students’ lear­ning.

ABA’s metho­do­logy is diffe­rent from tradi­tional approa­ches in that it empha­sises data-based decision making. It makes use of opera­tional defi­ni­tions of target beha­viours; the break-up of complex skills into teach­able units; objec­tive measures of progress; and the imple­men­ta­tion of scien­tific princi­ples and methods in teaching. These include rein­for­ce­ment, shaping and promp­ting. Promp­ting is the process of encou­ra­ging desired beha­viours. Rein­for­ce­ment is the rewar­ding of these beha­viours. shaping involves working gradu­ally towards a desired beha­viour in small steps that converge upon the target. Profes­sio­nals trained in ABA, whatever their area of exper­tise, share the same code of ethics and a focus on evidence-based proce­dures. These corner­stones in the prac­tice of beha­viour analysts – be they psycho­lo­gists, medical doctors, teachers, speech and language patho­lo­gists or allied-health profes­sio­nals – allow them to colla­bo­rate effi­ci­ently, and to bring in their special exper­tise while following a common scien­tific route. In ABA-based educa­tional programmes for students with ASD, a team of ABA-trained profes­sio­nals would gather before the inter­ven­tion starts and assess the student’s needs in diffe­rent deve­lo­p­mental areas. These might include academic, social, commu­ni­ca­tion or motor skills. This assess­ment would be the base­line against which the student’s progress would be measured, and diffe­rent profes­sio­nals would contri­bute according to their exper­tise. Occup­a­tional thera­pists, for instance, would provide the list of fine and gross skills to assess, according to the student’s age. An indi­vi­dua­lised educa­tional curri­culum would then be set for the student, incor­po­ra­ting teaching methods driven from the science, as well as indi­ca­tions of how to break down skills into smaller teach­able units and how to monitor progress. Again, diffe­rent profes­sio­nals would set the targets and methods for diffe­rent areas.

Conti­nuous measu­re­ment of the student’s progress by all profes­sio­nals would provide the basis for main­tai­ning teaching proce­dures that work, and chan­ging or substi­tu­ting the ones that do not seem to yield the best outcomes. To illus­trate how this might work, let’s take a student who is curr­ently recei­ving ABA-based one-to-one inst­ruc­tion at home and atten­ding a main­stream school with an ABA-trained shadow teacher. At the begin­ning of the academic year, all profes­sio­nals involved in the student’s educa­tion would meet with parents to discuss the lear­ning goals for the upco­ming year and decide on the most appro­priate teaching proce­dures to achieve them. For instance, if the student needed to learn how to respond to the teacher’s ques­tions on specific content, the following stra­tegy might be adopted: the one-to-one tutor would teach the mate­rial at home and record progress. The shadow teacher would provide prompts for the student to raise her hand at appro­priate times in class. And the teacher would make sure that there were oppor­tu­nities for praise and other forms of rein­for­ce­ment for correct responses.

All the profes­sio­nals involved would gather data on whether the student incre­a­singly parti­ci­pated in class. They would adapt their processes if the outcomes were not as posi­tive as expected.

It is clear that cross-disci­pli­nary work is possible and can prove very fruitful when teaching indi­vi­duals with a variety of needs. For it to work effec­tively, however, consis­tent scien­tific accoun­ta­bi­lity needs to underpin all strands. The science of ABA has a long-stan­ding history of achie­ving this level of accoun­ta­bi­lity, and we recom­mend that more profes­sio­nals be trained in it.

Dr. Kate­rina Dounavi, BCBA‑D (Board Certi­fied Beha­vior Analyst-Doctoral), is a lecturer in the School of Educa­tion and Deputy Director of the Centre for Beha­viour Analysis at Queen’s Univer­sity Belfast.

Link to the original article: https://​cerp​.aqa​.org​.uk

Many thanks to Anja Chlistalla for trans­la­ting the article Into German.

Refe­rences:
Dillen­burger, K., Rött­gers, H. R., Dounavi, K., Sparkman, C., Keenan, M., Thyer, B., et al. (2014). Multi­di­sci­pli­nary Team­work in Autism: Can One Size Fit All? The Austra­lian Educa­tional and Deve­lo­p­mental Psycho­lo­gist, 1–16. 10.1017/edp.2014.13

Teach me how to talk: 10 tips for teaching language to children with autism

1. Moti­va­tion: Iden­tify rein­forcers, i.e., the student’s prefe­rences, and make sure these vary as often as possible.

2. Create oppor­tu­nities for the students to ask for access to things or acti­vi­ties they like, make comments, respond to other people’s ques­tions.

3. Use a variety of ante­ce­dent stimuli (e.g., pictures, objects, ques­tions) so that the acquired skills are func­tional and easily gene­ra­lised.

4. Care­fully assess the condi­tions under which the child uses language, so that you can iden­tify where intense teaching is required and which are the next targets to work on.

5. Iden­tify which are the verbal or non-verbal pre-requi­site skills that should be taught first in order to faci­li­tate later teaching of more complex verbal skills.

6. Select and teach the use of alter­na­tive commu­ni­ca­tion forms (e.g., sign language, picture-based commu­ni­ca­tion systems, text-based commu­ni­ca­tion systems, use of voice-output digital devices) only when a signi­fi­cant delay in teaching speech is fore­seen and in combi­na­tion with teaching this. We should not forget that students will be included in an envi­ron­ment where the majo­rity of people around them use speech as the main means of commu­ni­ca­tion, so our target is that our students can also acquire it. However, since the ability of our student to commu­ni­cate with others is of crucial impor­t­ance inde­pendently of the used commu­ni­ca­tion form, when the use of Augmen­ta­tive and Alter­na­tive Commu­ni­ca­tion (AAC) forms is deemed necessary, we should care­fully assess which methods would better suit our students in their envi­ron­ment.

7. We conti­nuously record data on the student’s progress on all verbal and non-verbal skills we have set, so that we can at any given moment assess which teaching methods are effec­tive and which need to be modi­fied.

8. We care­fully plan for the gene­ra­li­sa­tion of mastered skills with other people (e.g., other adults, class­mates) and in diffe­rent settings (e.g., play­ground, home, school).

9. We teach complex verbal skills to students who are at an advanced deve­lo­p­mental level by following the beha­viour-analytic methods that have proven to be effec­tive in nume­rous studies. We do not forget that ABA is an applied science, thus it is effec­tive with indi­vi­duals of any age that need to learn new skills, inde­pendently of whether these are basic skills (e.g., children using single words to ask for things) or complex (e.g., secon­dary school student respon­ding compre­hen­sion ques­tions on a text and reci­ting history).

10. Finally, we do not forget that many academic skills (e.g., reading, writing, mathe­ma­tical calcu­la­tions) are also verbal skills or their progress depends on the progress of verbal skills! There­fore, in order to teach them we use the same evidence-based tech­ni­ques and a similar manner of analysis as we do for teaching language/verbal beha­viour.

Dr. Kate­rina Dounavi

Down Syndrome and Autistic Spectrum Disorder: A look at what we know

By George T. Capone, M.D.

This paper was written for the Down’s Syndrome Asso­cia­tion news­letter and is repro­duced here with the permis­sion of the author and the DSA

During the past 10 years, I’ve evaluated hund­reds of children with Down syndrome, each one with their own strengths and weak­nesses, and certainly their own perso­na­lity. I don’t think I’ve met a parent who does not care deeply for their child at the clinic. Their love and dedi­ca­tion is obvious. But some of the fami­lies stand out in my mind. Some­times parents bring their child with Down Syndrome to the clinic — not always for the first time — and they are deeply distraught about a change in their child’s beha­viour or deve­lo­p­ment. Some­times they describe situa­tions and isolated concerns that worry them such as their child has stopped lear­ning new signs or using speech. He is happy playing by himself, seeming to need no one else to make the odd game (shaking a toy, lining things up) he is playing fun. When they call to him, he doesn’t look at them. Maybe he isn’t hearing well? He will only eat 3 or 4 foods. The sugges­tion of a new food, or even an old favou­rite, brings about a tantrum like no other. He is constantly star­ting at the lights and ceiling fans. Not just while they pass by, but obses­si­vely. Getting him to stop staring at the lights is some­times diffi­cult and may result in a scene. He requires a certain order to things. Moving a chair to another spot in the room upsets him until it is returned to its usual spot.

Some fami­lies do their own rese­arch and mention they think their child may have autistic spec­trum disorder (ASD) along with Down Syndrome. Others have no idea what may be happe­ning. They do know it isn’t good and they want answers now. This article is for fami­lies in situa­tions like this and other, similar ones. If your child has been dually-diagnosed with Down Syndrome and Autistic Spec­trum Disorder (DS-ASD) or if you believe your child may have ASD, you will learn a little more about what that means, what we are lear­ning through data collec­tion, and insights to the evalua­tion process.

There is little written in the form of rese­arch or commen­tary about DS-ASD. In fact, until recently it was commonly believed that the two condi­tions could not exist toge­ther. Parents were told their child had Down Syndrome with a severe to profound impairment without further inves­ti­ga­tion or inter­ven­tion into a diagnostic cause. Today, the medical profes­sion reco­gnises that people with Down Syndrome may also have a psych­iatric ‑related diagnosis such as ASD or Obses­sive Compul­sive Disorder (OCD). Because this philo­sophy is rela­tively new to medical and educa­tional profes­sio­nals, there is little known about children and adults with DS-ASD medi­cally or educa­tio­nally.

Over the past six years we have gathered data and studied DS-ASD at Kennedy Krieger Insti­tute. We have collected and analysed data from clinical medical evalua­tions, psycho­lo­gical and beha­vioural testing, and MRI scans of the brain. We now follow a cohort of appro­xi­mately 30 children with DS-ASD through the Down Syndrome Clinic, possibly the largest group of children with DS-ASD that has been gathered.

What Should I Look For?

Signs and Symptoms
As parents, it is common, if not expected, for you to worry at times about your child’s deve­lo­p­ment. It is also common to hear only part of the criteria for a parti­cular label. This is espe­cially true when it comes to DS-ASD because there is little infor­ma­tion avail­able on the topic. This can be espe­cially trou­ble­some if your child suddenly picks up a new habit you asso­ciate with ASD such as inces­santly shaking toys. The children we have seen at Kennedy Kreiger Insti­tute who have DS-ASD present symptoms in several diffe­rent ways, which we have sepa­rated into two general groups:

Group One
Children in this first group appear to display “atypical” beha­viours early. During infancy or toddler years you may see:

  • repe­ti­tive motor beha­viours (fingers in mouth, hand flap­ping),
  • fasci­na­tion with and staring at lights, ceiling fans, or fingers,
  • extreme food refusal,
  • repe­ti­tive language problems (poor under­stan­ding and use of gestures) possibly giving the appearance that the child does not hear, and
  • spoken language may be highly repe­ti­tive or absent.

Along with these beha­viours, other medical condi­tions may also be present inclu­ding seizures, dysfunc­tional swallow, nystagmus (a constant move­ment of the eyes), or severe hypo­tonia (low muscle tone) with a delay in motor skills.

If your child with Down Syndrome is young, you may see only one or a few of the beha­viours listed above. This does not mean your child will necessa­rily progress to have autistic spec­trum disorder. It does mean that they should be moni­tored closely and may benefit from recei­ving diffe­rent inter­ven­tion services (such as sensory inte­gra­tion) and teaching stra­te­gies (such as visual commu­ni­ca­tion stra­te­gies or discrete trial teaching) to promote lear­ning.

Group Two
A second group of children are usually older. This group of children expe­ri­ence a dramatic loss (or plateauing) in their acqui­si­tion and use of language and social-atten­ding skills. This deve­lo­p­mental regres­sion may be followed by exces­sive irri­ta­bi­lity, anxiety, and the onset of repe­ti­tive beha­viours. This situa­tion is most often reported by parents to occur following an other­wise “typical” course of early deve­lo­p­ment for a child with Down Syndrome. According to parents, this regres­sion most often occurs between ages three to seven years. The medical concerns and stra­te­gies for these two groups may be diffe­rent. There is not enough infor­ma­tion avail­able to know at this time. However, regard­less of how or when ASD is first disco­vered, children with DS-ASD have similar educa­tional and beha­vioural needs once they are iden­ti­fied.

Signs and Symptoms Vary
Although we are docu­men­ting some simi­la­ri­ties in the way DS-ASD pres­ents, autism is what is consi­dered a spec­trum disorder. This means every child with DS-ASD will be diffe­rent in one way or another. Some will have speech, some will not. Some will rely heavily on routine and order, and others will be more easy-going. Combined with the wide range of abili­ties seen in Down Syndrome alone, it can feel mysti­fying. It is easier if you have an under­stan­ding of ASD disor­ders sepa­rate from Down Syndrome.

Autism, autistic-like condi­tion, autistic spec­trum disorder (ASD), and perva­sive deve­lo­p­mental disorder (PDD) are terms that mean the same thing, more or less. They all refer to a neuro­be­ha­vioural syndrome diagnosed by the appearance of specific symptoms and deve­lo­p­mental delays early in life. These symptoms result from an under­lying disorder of the brain, which may have multiple causes, inclu­ding Down Syndrome. At this time, there is some disagree­ment in the medical commu­nity regar­ding the specific evalua­tions necessary to iden­tify the syndrome or the degree to which certain “core-features” must be present to estab­lish the diagnosis of ASD in a child with Down Syndrome. Unfor­tu­n­a­tely, the lack of specific diagnostic tests creates consi­derable confu­sion for profes­sio­nals, parents, and others trying to under­stand the child and develop an optimal medical care and effec­tive educa­tional programme.

There is general agree­ment that:

  • Autism is a spec­trum disorder: it may be mild or severe.
  • Many of the symptoms overlap with other condi­tions such as obses­sive-compul­sive disorder (OCD) or atten­tion deficit hyper­ac­ti­vity disorder (ADHD).
  • ASD is a deve­lo­p­mental diagnosis. Expres­sion of the syndrome varies with a child’s age and deve­lo­p­mental level.
  • Autism can co-exist with condi­tions such as lear­ning disa­bi­lity, seizure disorder or Down Syndrome.
  • Autism is a life-long condi­tion.

The most commonly described areas of concern for children with ASD include:

  • Commu­ni­ca­tion (using and under­stan­ding spoken words or signs),
  • Social skills (rela­ting to people and social circum­s­tances),
  • Repe­ti­tive body move­ments or beha­viour patterns.

Of course there is incon­sis­tency in any of these areas in all children, espe­cially during early child­hood. Children who have ASD may or may not exhibit all of these charac­te­ris­tics at any one time nor will they consist­ently demons­trate their abili­ties across similar circum­s­tances. Some of the variable charac­te­ris­tics of ASD we have commonly observed in children with DS-ASD include:

  • Unusual response to sensa­tions (espe­cially sounds, lights, touch or pain),
  • Food refusal (preferred textures or tastes),
  • Unusual play with toys and other objects,
  • Diffi­culty with changes in routine or fami­liar surroun­dings,
  • Little or no meaningful commu­ni­ca­tion,
  • Disrup­tive beha­viours (aggres­sion, thro­wing tantrums, or extreme non-compli­ance),
  • Hyper­ac­ti­vity, short atten­tion, and impul­si­ve­ness,
  • Self-inju­rious beha­viour (skin picking, head hitting or banging, eye-poking, or biting),
  • Sleep distur­bances, and
  • History of deve­lo­p­mental regres­sion (esp. language and social skills).

Some­times these charac­te­ris­tics are seen in other child­hood disor­ders such as atten­tion deficit hyper­ac­ti­vity disorder or obses­sive compul­sive disorder. Some­times ASD is over­looked or consi­dered inap­pro­priate for a child with Down Syndrome due to cogni­tive impairment. For instance, if a child has a high degree of hyper­ac­ti­vity and impul­si­ve­ness only the diagnosis of ADHD may be consi­dered. Children with many repe­ti­tive beha­viours may only be regarded as having stereo­typy move­ment disorder (SMD), which is common in indi­vi­duals with severe cogni­tive impairments.

Most parents agree that severe beha­viour problems are usually not easily fixed. Finding solu­tions for beha­vioural concerns is one reason fami­lies seek help from physi­cians and beha­viour specia­lists. Compared to other groups of children with cogni­tive impairment, those with Down Syndrome, as a group, are less likely to have beha­vioural or psych­iatric disor­ders. When they do, it is some­times referred to as having a “dual diagnosis”. It is important for profes­sio­nals to consider the possi­bi­lity of a dual diagnosis (Down Syndrome with a psych­iatric condi­tion such as ASD or OCD) because:

  • It may be respon­sive to medi­ca­tion or beha­vioural treat­ments, and
  • A formal diagnosis may entitle the child to more specia­lised and effec­tive educa­tional and inter­ven­tion services.

If you think your child may have ASD, share this before or during your evalua­tion. Don’t wait to see what might happen.

Inci­dence
Esti­ma­ting the preva­lence or occur­rence of ASD among children and adults with Down Syndrome is diffi­cult. This is partly due to disagree­ment about diagnostic criteria and incom­plete docu­men­ta­tion of cases over the years. Curr­ently, esti­mates vary between 1 and 10%. I believe that 5–7% is a more accu­rate esti­mate. This is substan­ti­ally higher than is seen in the general popu­la­tion (.04%). and less than other groups of children with lear­ning disa­bi­li­ties (20%). Appar­ently, the occur­rence of trisomy 21 lowers the thres­hold for the emer­gence of ASD in some children. This may be due to other genetic or other biolo­gical influ­ences on brain deve­lo­p­ment.

A review of the lite­ra­ture on this subject since 1979 reveals 36 reports of DS-ASD (24 children and 12 adults). Of the 31 cases that include gender, an asto­nis­hing 28 indi­vi­duals were males. The male-to-female ratio is much higher than the ratio seen for autism in the general popu­la­tion. Addi­tio­nally, in reports that include cogni­tive level, most children tested were in the severe range of cogni­tive impairment. Gene­rally, the cause of ASD is poorly unders­tood, whether or not it is asso­ciated with Down Syndrome. There are some medical condi­tions in which ASD is more common such as Fragile‑X syndrome, other chro­mo­some anoma­lies, seizure disorder, and pre-natal or peri­natal viral infec­tions. Down Syndrome should be included in this list of condi­tions. The impact of a pre-exis­ting medical condi­tion such as Down Syndrome on the deve­lo­ping brain is probably a critical factor in the emer­gence of ASD disorder in a child.

Brain Deve­lo­p­ment and ASD
The deve­lo­p­ment of the brain and how it func­tions is diffe­rent in some way in children with DS-ASD than their peers with Down Syndrome. Charac­te­ri­sing and recording these diffe­rences in brain deve­lo­p­ment through detailed evalua­tion of the situa­tion will provide a better under­stan­ding of the situa­tion and possible treat­ments for children with DS-ASD.

A detailed analysis of the brain performed at autopsy or with magnetic reso­nance imaging MRI in children with autism shows invol­ve­ment of several diffe­rent regions of the brain:

  • The limbic system, which is important for regu­la­ting emotional response, mood and memory,
  • The temporal lobes, which are important for hearing and normal proces­sing of sounds,
  • The cere­bellum, which co-ordi­nates motor move­ments and some cogni­tive opera­tions, and
  • The corpus callosum, which connects the two hemi­s­pheres of the cortex toge­ther.

At Kennedy Krieger Insti­tute, we have conducted MRI studies of 25 children with DS-ASD. The preli­mi­nary results support the notion that the cere­bellum and corpus callosum is diffe­rent in appearance in these children compared to those without Down Syndrome alone. We are presently evalua­ting other areas of the brain, inclu­ding the limbic system and all major cortical subre­gions, to look for addi­tional markers that will distin­guish children with DS-ASD from their peers with Down Syndrome alone.

Brain Chemi­stry and ASD
The neuro­che­mi­stry (chemi­stry of the brain) of autism is far from clear and very likely involves several diffe­rent chemical systems of the brain. This infor­ma­tion provides the basis for medi­ca­tion trials to impact the way the brain works in order to elicit a change in beha­viour. An analysis of neuro­che­mi­stry in children with ASD alone has consist­ently iden­ti­fied invol­ve­ment of at least two systems.

  • Dopa­mine: regu­lates move­ment, posture, atten­tion, and reward beha­viours; and
  • Sero­tonin: regu­lates mood, aggres­sion, sleep, and feeding beha­viours.

Addi­tio­nally, opiates, which regu­late mood, reward, responses to stress, and percep­tion of pain, may also be involved in some children. Detailed studies of brain chemi­stry in children with DS-ASD have not yet been done. However, our clinical expe­ri­ence in using medi­ca­tions that modu­late dopa­mine, sero­tonin or both systems has been favourable in some children with DS-ASD.

How Do I Find Out?

Obtai­ning an Evalua­tion
If you suspect your child with Down Syndrome has some of the charac­te­ris­tics of ASD or any other condi­tion quali­fying as a dual diagnosis, it is important for him to be seen by someone with suffi­cient expe­ri­ence evalua­ting children with cogni­tive impairment — ideally Down Syndrome in parti­cular. Some of the same symptoms which occur in DS-ASD are also seen in stereo­typy move­ment disorder, major depres­sion, post-trau­matic stress disorder, acute adjus­t­ment reac­tions, obses­sive-compul­sive disorder, anxiety disorder, or when children are exposed to extre­mely stressful and chaotic events or envi­ron­ments.

Some­times when children with Down Syndrome are expe­ri­en­cing medical problems that are hidden — such as earache, headache, toot­hache, sinu­sitis, gastritis, ulcer, pelvic pain, glau­coma, and so on — the situa­tion results in beha­viours that may appear “autistic-like” such as self-injury, irri­ta­bi­lity, or aggres­sive beha­viours. A compre­hen­sive medical history and physical exami­na­tion is manda­tory to rule out other reasons for the beha­viour. When co- opera­tions is elusive, seda­tion or anaes­thesia may be required. If so, use this “anaes­thesia time” effec­tively by sche­du­ling as many specialty exami­na­tions as are feasible at one session. In addi­tion to the medical assess­ment, you will be asked to help complete a check­list to deter­mine whether or not your child has ASD. I use the Autism Beha­viour Check­list (ABC). But there are others that are also used such as the Child­hood Autism Rating Scale (CARS) and the Gilliam Autism Rating Scale (GARS). Each of these is completed either in an inter­view with parents or done by parents before coming to the appoint­ment. They are then scored and consi­dered along with clinical obser­va­tion to deter­mine if your child has ASD.

Obsta­cles to Diagno­sing DS-ASD

If it looks like a duck, and it quacks like a duck… guess what?”

Parents some­times face unne­cessary obsta­cles in seeking help for their children. Parents have shared several reasons demons­tra­ting this. Some of the more common include:

Failure to Reco­gnise the Dual Diagnosis
Problem:Failure to reco­gnise the dual diagnosis except in the most severe cases.
Result: This is frus­tra­ting for ever­yone who is actively seeking solu­tions for a child. If you are in this situa­tion and feel that your concerns are not taken seriously, keep trying. The best advice is to trust your gut feeling regar­ding your child. Even­tually you will find someone willing to look at all the possi­bi­li­ties with you.

Lack of Accep­t­ance by Profes­sio­nals
Problem: There is some­times a lack of accep­t­ance by profes­sio­nals that ASD can co-exist in a child with Down Syndrome who has cogni­tive impairment. They may feel an addi­tional label is not necessary or accu­rate. Parents may be told “This is part of ‘low func­tio­ning’ Downs Syndrome.” Today we know that this is not right. Children with DS-ASD are clearly distin­guis­hable from children with Down Syndrome alone or those who have Down Syndrome and severe cogni­tive impairment when stan­dar­dised diagnostic assess­ment tools such as the ABC are used.
Resultat:Parents become frus­trated and may give up trying to obtain more specific medical treat­ment or beha­vioural inter­ven­tion.

Confu­sion in Parents
Problem: Lack of accep­t­ance, under­stan­ding, awareness, or agree­ment on the part of parents or other family members, parti­cu­larly of very young children, about what’s happe­ning. Initial reac­tions by fami­lies and parents vary consi­der­ably from, “This too shall pass” to “Why isn’t he doing as much as other kids with DS?”
Result: Parents in this situa­tion may find them­selves at odds with each other about the signi­fi­cance of their child’s beha­viour and what to do about it. As a result, marriages are stressed, paren­ting rela­ti­ons­hips with other children are strained, and life is tough altog­e­ther. Unfor­tu­n­a­tely, I have found that parents in this situa­tion almost univer­sally with­draw from local Down Syndrome support groups or other groups that may provide support. There are a variety of reasons for this inclu­ding “the topics discussed don’t apply to my child”, “It’s just too hard to see all those children doing so much more than my child”, and “I feel like people think I’m a bad parent because of my daughter’s beha­viour.” Ideally someone in the parent group would reco­gnise this when it is happe­ning and offer addi­tional support instead of watching them with­draw. What is worri­some is that the very parents who are most in need of support and assi­s­tance cannot or do not receive it within the context of their local parent group. In fact, there may not be another parent in the group with a child who is similar because DS-ASD is uncommon and not easily shared. It is critical that parents have an oppor­tu­nity to meet and learn from other parents whose children also have DS-ASD. Despite the under­lying medical condi­tion (trisomy 21), the neuro­be­ha­vioural syndrome of ASD may mean that a support group for fami­lies of children with autism will be helpful as well. However, because of the lack of accep­t­ance or know­ledge about the dual diagnosis, these support groups can be equally daun­ting.

What Does it Mean?

Beha­vioural Findings
Obtai­ning a diagnosis of DS-ASD is rarely helpful in under­stan­ding how ASD affects your child. It is compli­cated by the lack of infor­ma­tion avail­able, making it diffi­cult to discern appro­priate medical and educa­tional options. To deter­mine what beha­viors are most common in DS-ASD we are conduc­ting case-control studies which randomly match (for gender and age) a child with DS-ASD with a child who has Down Syndrome without ASD. These compa­ri­sons are based on the infor­ma­tion obtained from the ABC toge­ther with a detailed deve­lo­p­mental history and beha­vioural obser­va­tion. Through this process we have been able to deter­mine the following:
Children with DS-ASD were more likely to have:

  • History of deve­lo­p­mental regres­sion inclu­ding loss of language and social skills,
  • Poor commu­ni­ca­tion skills (many children had no meaningful speech or signing),
  • Self-inju­rious and disrup­tive beha­viours (such as skin picking, biting, and head hitting or banging),
  • Repe­ti­tive motor beha­viours (such as grin­ding teeth, hand flap­ping, and rocking),
  • Unusual voca­li­sa­tions (such as grun­ting, humming, and throaty noises),
  • Unusual sensory respon­si­ve­ness (such as spin­ning, staring at lights, or sensi­ti­vity to certain sounds),
  • Feeding problems (such as food refusal or strong prefe­rence for specific textures), and
  • Incre­ased anxiety, irri­ta­bi­lity, diffi­culty with tran­si­tions, hyper­ac­ti­vity, atten­tion problems, and signi­fi­cant sleep distur­bances.

Other obser­va­tions include:

  • Children with DS-ASD scored signi­fi­cantly higher than their peers with Down Syndrome alone on all five subs­cales of the ABC: sensory func­tion, social rela­ting, body and object use, language use, and social skills.
  • Children with DS-ASD show less impairment in social rela­ted­ness than those with ASD only.
  • Children with DS-ASD show more preoc­cup­a­tion with body move­ment and object use than children with ASD alone.
  • Children with DS-ASD scored higher on all five subs­cales of the ABC than children with severe cogni­tive impairment alone.
  • Among children with Down Syndrome only, even those with severe cogni­tive impairment do not always meet the criteria for ASD.

The conclu­sion I draw from this data is children with DS-ASD are clearly distin­guis­hable from both “typical” children with Down Syndrome and those with severe cogni­tive impairment (inclu­ding children with Down Syndrome). Thus, it is probably incor­rect to suggest autistic-like beha­viours are enti­rely due to lower cogni­tive func­tion. However, the fact that autistic features and lower cogni­tion are asso­ciated indi­cates there is some shared determinant(s) that is common to both features (ASD and lower cogni­tion) of the condi­tion.

Asso­ciated Medical Condi­tions
There are ques­tions about the possi­bi­lity of simi­la­ri­ties in the variety of medical condi­tions asso­ciated with Down Syndrome in general in children with DS-ASD. To deter­mine this we used the same matching scheme as described above. It is important to point out the number of matched pairs curr­ently in our study is quite small and, as a result, some of these findings may not hold up as we examine more children.

Children with DS-ASD were more likely to have:

  • Conge­nital heart disease and anato­mical GI tract anoma­lies,
  • Neuro­lo­gical findings, (i.e. seizures, dysfunc­tional swallow, severe hypo­tonia and motor delay),
  • Ophthal­mo­logic problems,
  • Respi­ra­tory problems (i.e. Pneu­monia and sleep apnoea), and
  • Incre­ased total number of medical condi­tions.

What Now?

After the Evalua­tion
If you child has DS-ASD, obtai­ning a diagnosis or label may be a relief of sorts. The addi­tion of ASD brings new ques­tions. From a medical perspec­tive it is important to consider use of medi­ca­tion, parti­cu­larly in older children, for specific beha­viours. This is espe­cially true if these beha­viours inter­fere with lear­ning or socia­li­sa­tion. While there is no cure or remar­kably effec­tive treat­ment for Down Syndrome and autistic spec­trum, certain “target beha­viours” may be respon­sive to medi­ca­tion. Some of these beha­viours include:

    • Hyper­ac­ti­vity and poor atten­tion,
    • Irri­ta­bi­lity and anxiety,
    • Sleep distur­bance,
    • Explo­sive beha­viours resul­ting in aggression/disruption (can some­times be reduced), and
    • Self-injury (can some­times be reduced).

As you continue to take care of your child, make a point to take care of yourself and your family — in that order. You have a life and a family to consider. Reco­gnise that there is only so much time, energy and resources that you can put into this “project”. Of course there will be cycles, of good time and bad, but if you can’t find some way to renew your emotional spirit, the “burn-out” is inevi­table. There is a higher rate of anxiety, sleep problems, lack of energy, depres­sion, and failed or struggling marriages under these circum­s­tances. Learn to reco­gnise your own diffi­cul­ties and be honest with yourself and your spouse about the need for help. Coun­sel­ling and medi­ca­tion may go a long way in helping you to be at your best for everyone’s sake.

Conclusion

Clearly there is a great deal to be learned about children with Down Syndrome who are dually diagnosed with autism spec­trum disorder. In the mean­time, it is essen­tial for parents to educate them­selves and others about this condi­tion. Fami­lies must work on buil­ding a team of health-care profes­sio­nals, thera­pists and educa­tors who are inte­rested in working with their child to promote the best possible outcome. Rese­arch efforts must move beyond mere descrip­tion to address causa­tion, early iden­ti­fi­ca­tion, and natural history. Specific markers in the deve­lo­p­ment of the brain which can distin­guish DS-ASD from “typical” Down Syndrome and “typical autism” need to be sought; and the possible bene­fits of various treat­ments need ot be more care­fully docu­mented. Reali­sing these goals will take a very long time to accom­plish and must be approa­ched with a spirit of support, co-opera­tion, and caring both for indi­vi­dual children and the larger commu­nity of children with DS-ASD.

Thank You for appro­ving to trans­late this Article and publish it on our Website to George T Capone, MD. George T Capone, MD, is the Director of the Down Syndrome Clinic and Atten­ding Physi­cian on the Neuro­be­ha­vioral Unit at Kennedy Krieger Insti­tute in Balti­more, Mary­land.

Read and down­load the Original Version in ENG here:
http://​www​.dsmig​.org​.uk/​l​i​b​r​a​r​y​/​a​r​t​i​c​l​e​s​/​c​a​p​o​n​e​-​a​u​t​i​s​t​i​c​-​s​p​e​c​t​r​u​m​-​d​i​s​o​r​d​e​r​.​pdf

Refe­rences:

    • Kent, L., J., Paul, M., and Sharp, M. “Comor­bi­dity of Autistic Spec­trum Disor­ders in Children with Down Syndrome.” Deve­lo­p­mental Medi­cine and Child Neuro­logy41:154–158 (1999).
    • Howlin, P., Wing, L., and Gould, J. “The Reco­gni­tion of Autism in Children with Down Syndrome: Impli­ca­tions for Inter­ven­tion and Some Specu­la­tions About Patho­logy.” Deve­lo­p­mental Medi­cine and Child Neuro­logy 37:406–414 (1995).
    • Ghaziuddin, M., Tsai L., and Ghaziuddin, N. “Autism in Down- Syndrome: Presen­ta­tion and Diagnosis” Journal of Intel­lec­tual Disa­bi­lity Rese­arch 36:449–456 (1992).
    • Rapin, I., “Autism.” New England Journal of Medi­cine 33(2): 97–104 (1997).
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    • Rogers, S. “Neuro­psy­cho­logy of Autism in Young Children and Its Impli­ca­tions for Early Inter­ven­tion.” Mental Retar­da­tion and Deve­lo­p­ment Disa­bi­li­ties Rese­arch Reviews 4: 104–112 (1998).
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Behavioral and skill-based early intervention in children with autism

HTA report | Summary
Wein­mann S, Schwarz­bach C, Bege­mann M, Roll S, Vauth C, Willich SN, Greiner W:

Intro­duc­tion
Autistic syndromes include early child­hood autism (kanner syndrome), Asperger’s syndrome and atypical autism forms or non-speci­fied profound deve­lo­p­mental disor­ders. In autistic syndromes, there are impairments (1) of commu­ni­ca­tion and (2) of social inter­ac­tion. Further­more (3) the children exhibit stereo­ty­pical, repe­ti­tive beha­vior to varying degrees and have certain special inte­rests.
In recent years, epide­mio­lo­gical studies have shown an increase in the preva­lence rate. So far, it has been unclear whether this increase can be explained mainly by diffe­rences in study metho­do­logy or actually reflects an epide­mio­lo­gi­cally more frequent occur­rence. People with autistic syndromes need support and care over a longer period of time, as well as often throughout life. Children or adolescents with autism attend all avail­able types of kinder­garten and school, using special forms of inst­ruc­tion in small groups to meet the special needs of children. However, the promo­tion and inte­gra­tion of the affected children, which is fair to the syndrome, has so far been poorly imple­mented in Germany. Adults with autism are cared for by diffe­rent insti­tu­tions and social services in Germany, with very few attuned to their specific problems.
Both drug and non-medi are trea­ting methods for autism. Some medi­ca­tions can alter certain aspects of beha­vior, affects or acti­vity levels. Evidence of an impro­ve­ment in the overall course of drug inter­ven­tion does not yet exist, so the main inter­ven­tions are non-drug in nature and to the promo­tion of deve­lo­p­ment, the influ­ence of beha­viour and the promo­tion of beha­viour. Family and social ties. There are now a variety of psycho­so­cial inter­ven­tions. Most are based on lear­ning theory and beha­vioural therapy concepts and take into account the parti­cular impairments in percep­tion, emotional responses, social inter­ac­tions and commu­ni­ca­tion patterns.
However, the syste­matic appli­ca­tion and evalua­tion of such models in Germany is now more of an excep­tion. Since the publi­ca­tion of studies in which a signi­fi­cant propor­tion of children have under­gone an intel­li­gence level in the normal area, which is mostly deve­loped in the United States of America (USA), even alters and an admis­sion to a normal school achieved, high expec­ta­tions. However, the early studies were criti­cised due to metho­do­lo­gical defi­ci­en­cies and selec­tion effects, so that the analysis of recent studies has to provide guid­ance on which early inter­ven­tions should also be encou­raged in Germany and which inter­ven­tion compon­ents contri­bute to effi­cacy.

Ques­tions
The evalua­tion of early inter­ven­tion programmes is a major chal­lenge due to the nature of the disrup­tion and metho­do­lo­gical problems. There are curr­ently no uniform stan­dards for asses­sing the effec­ti­ve­ness of early inter­ven­tions in autism. Results para­me­ters in studies on autistic syndromes are intended to include core areas of autism (such as deve­lo­p­mental steps, commu­ni­ca­tive skills, social inter­ac­tions, lingu­istic skills, repe­ti­tive beha­viors), special beha­vioral problems (such as sleep distur­bances and aggres­sion), intel­li­gence and quality of life, but also objec­tive para­me­ters such as school admis­sion or the need to take home. This health tech­noloy assess­ment (HTA) report examines the ques­tion of how the health effec­ti­ve­ness and safety of beha­vioral or prefa­bric-based early inter­ven­tions in autistic syndromes with each other and compared to a stan­dard treat­ment. It also examines whether there is evidence of parti­cular factors for effec­ti­ve­ness, such as the type and inten­sity of treat­ment.
For the economic part, the ques­tion is based on the cost-effec­ti­ve­ness of the various beha­vioral And ready-based inter­ven­tions and the costs of such care. It is also to be examined whether, on the basis of ethical and legal consi­de­ra­tions, conclu­sions can be drawn about the appli­ca­tion of the inter­ven­tions under consi­de­ra­tion in those with autistic syndrome in prac­tice.

Methods
The rele­vant lite­ra­ture is iden­ti­fied by a syste­matic elec­tronic lite­ra­ture search, a hand search and the cover letter of rele­vant insti­tu­tions. This survey does not claim to be exhaus­tive.
From 2000 onwards, controlled studies published in German or English will include children up to the age of 12 who have a diagnosis from the autism spec­trum. Diagnostic and statis­tical manual of mental disor­ders (DSM) or inter­na­tional clas­si­fi­ca­tion of dise­ases (ICD). The inter­ven­tions reviewed are beha­vioral or prefa­bric-based inter­ven­tions desi­gned speci­fi­cally for children with autism. Beha­vioural or prefa­bric-based inter­ven­tion is defined here as an inter­ven­tion aimed at impro­ving beha­viour and/or the func­tional skills or deve­lo­p­ment process of children, and beha­vioral therapy stra­te­gies or a trai­ning of specific skills. The minimum number of study parti­ci­pants must be ten per inter­ven­tion group. Only studies with a survey of outcomes (treat­ment results) of at least six months after the start of the inter­ven­tion are taken into account. There are no restric­tions on the endpoints under inves­ti­ga­tion. The selec­tion of the studies is carried out inde­pendently by two scien­tists, taking into account the pre-defined inclu­sion and exclu­sion criteria.

Results
Based on the defined search terms and she search carried out, after the exclu­sion of dupli­cate studies, 2,281 Hits will be paid for medical rese­arch (inclu­ding 999 hits for clinical primary studies, 1,252 hits for clinical syste­matic reviews, and meta-analyses and 30 hits for HTA reports), 235 health economic and 135 hits for ethische/rechtliche/social aspects iden­ti­fied. After reviewing the abstracts, 102 clinical and 52 economic texts are ordered as full texts. In the end, 15 publi­ca­tions of clinical primary studies, eight syste­matic reviews and an economic publi­ca­tion meet the pre-defined inclu­sion criteria. Three treat­ment guide­lines citing early inter­ven­tions in children with autism are reported.
The 15 iden­ti­fied publi­ca­tions of clinical primary studies are based on 14 studies, inclu­ding eight rando­mised controlled trials (RCT) and six non-rando­mised controlled trials. Six studies were conducted in the US, five studies in the UK and one each in Israel, Australia and Norway, none in Germany.
Most studies evaluate inten­sive early inter­ven­tions based on the model of Lovaas (Early Inten­sive beha­vioural Treat­ment (EIBT), Applied beha­vioural analysis (ABA)). Some studies evaluate other inter­ven­tions that were partly prag­matic and partly follow a parti­cular model (specific parental trai­ning, respon­sive educa­tion and prelin­gu­istic milieu teaching (RPMT), joint atten­tion (YES), symbolic gaming (SP) and Picture exchange commu­ni­ca­tion system (PECS)). The inter­ven­tions studied, as well as the compa­ra­tive inter­ven­tions (partly routine treat­ment, so-called eclectic treat­ment from mixed elements, waiting list, lower frequency treat­ment or other specific treat­ment concept) were very much diffe­rent.
Based on the evaluated syste­matic reviews and the evaluated primary studies, beha­vioral analy­tical inter­ven­tions based on the Lovaas model can continue to be consi­dered the best empi­ri­cally targeted early inter­ven­tions in children with autism be viewed. In most studies, the subgroup of children with initi­ally higher intel­li­gence quoti­ents (IQ) had better treat­ment outcomes than the group with lower IQ. Overall, the effect strengths depended heavily on the type of routine treat­ment. The studies suggest that preschoo­lers with autism are impro­ving in cogni­tive and func­tional areas through beha­vioural inter­ven­tions with a minimum inten­sity of 20 hours per week (expres­sive language, language compre­hen­sion and commu­ni­ca­tion) be able to reach. The core symptoms of autism there­fore appear to be quite acces­sible to early treat­ment. However, it remains unclear what minimum inten­sity is necessary and which impact compon­ents are respon­sible for the results. Moreover, there is no solid direct evidence of a supe­rio­rity of an early start to inter­ven­tion. Based on the selected studies, no solid state­ments can be made on the effects of parent, hospital or centre-based programs based on the Lovaas model.
There is no high-quality evidence for other compre­hen­sive early inter­ven­tions in children with autism. There is also little evidence for the PECS and RPMT, which are basi­cally not compre­hen­sive early inter­ven­tions but theory-led addi­tional inter­ven­tions, that the bene­fits observed in the studies in social commu­ni­ca­tion and language Can be trans­ferred to the ever­yday life of the children.
The publi­ca­tion iden­ti­fied and included in the economic sub-sector is not metho­di­cally and thema­ti­cally suitable for even begin­ning to answer the cost-effec­ti­ve­ness or cost effects of early inter­ven­tions in autism. This study lists costs for an early inter­ven­tion programme (here based on the Lovaas model) between GBP 15,000 and GBP 30,000. The refe­rence date of this data is not clear. The costs are still not linked to effi­ci­ency measures, so no state­ment can be made about the effi­ci­ency of the funds used. A descrip­tive publi­ca­tion also takes a very brief look at the cost of imple­men­ting beha­vioral early inter­ven­tion programmes. It states that this can exceed $60,000. Valide state­ments for the German supply context are not possible.
No publi­ca­tions are iden­ti­fied regar­ding legal, ethical and social issues. The finan­cial situa­tion of those affected and fami­lies is improved by the care deve­lo­p­ment act (Pf-WG). Other legal issues rela­ting to autism arise, for example, in connec­tion with the restric­tion of decision-making or consent, problems of busi­ness capa­city or legal repre­sen­ta­tion of the persons concerned. Care is also rele­vant from an ethical point of view, with pati­ents being cared for in the majo­rity in the home envi­ron­ment, with carers often survived by the autistic indi­vi­duals. Equal care and care in Germany are also important ques­tions, espe­cially against the back­ground of care in the home envi­ron­ment.

Discus­sion
There are few metho­di­cally appro­priate studies to assess the effec­ti­ve­ness of early inter­ven­tions in children with autism. Most studies are compa­ra­tively short and partly do not have a linked result rating. In many cases, compli­ance with the thera­peutic rules (manual fide­lity) has not been levied. Although mostly stan­dar­dized result para­me­ters were used, the Wechsler intel­li­gence scales used to measure IQ are only parti­ally suitable because they are unde­re­sti­mated by the intel­li­gence in the affected ones. Children can lead.
The lack of high-quality compa­ra­tive studies does not allow a solid answer to the ques­tion of which early inter­ven­tion is most effec­tive in which children with autism. Overall, it can be deter­mined that inten­sive, beha­vioral programs appear most effec­tive under the Lovaas model. This is espe­cially true when they are performed clinic-based. Parental trai­ning is better than routine treat­ment in which a mixture of therapy-elements is used in terms of impro­ving commu­ni­ca­tion. For both clinical and health economic studies, the problem of insuf­fi­cient gene­ra­liza­bi­lity of the study results is in the German supply context. The clinical studies show that effect strengths depend heavily on the type of control inter­ven­tion. There­fore, other studies, which are carried out in the German or a compa­rable health system, are parti­cu­larly desi­rable.
There is clear evidence that parental invol­ve­ment in inter­ven­tion programmes is very important. Ideally, parents should be trained as co-thera­pists and master the tech­ni­ques. However, early inter­ven­tion programmes should also meet the needs of fami­lies and must be adapted accord­ingly.
Early inter­ven­tion programmes appear most successful when they support fami­lies and aim to provide them with skills in dealing with the children involved. For the children, inter­ac­tions with their peers seem to be of great impor­t­ance. Only then can a gene­ra­li­sa­tion of the skills learned during specific beha­vioral inter­ven­tions be achieved in children’s ever­yday lives and in daily routines. Like­wise, typical autistic beha­viors seem to dimi­nish.
Early inter­ven­tions in children with autism should target specific core areas (such as joint atten­tion, certain lingu­istic skills, imita­tion, social inter­ac­tion). The simul­ta­neous compre­hen­sive consi­de­ra­tion of all areas of life seems less sensible. A mana­lized treat­ment model seems to have advan­tages over a mix of many indi­vi­dual compon­ents. However, the proce­dure should in any case be indi­vi­dua­lised and leave enough room for modi­fi­ca­tions.
The economic studies are not metho­di­cally and thema­ti­cally suitable for answe­ring the ques­tions raised.

Conclu­sion
Based on the current study situa­tion, there is insuf­fi­cient evidence for none of the early beha­vioral inter­ven­tions studied in children with autism. The studies and reviews evaluated in this report suggest that preschoo­lers with autism can achieve impro­ve­ments in cogni­tive and func­tional areas through beha­vioral inter­ven­tions with a minimum inten­sity of 20 hours per week. There is so far no evidence that a substan­tial propor­tion of children can achieve a complete norma­li­sa­tion of deve­lo­p­ment. In the studies with the best treat­ment results, a signi­fi­cant acce­le­ra­tion of the rate of deve­lo­p­ment was achieved in up to half of the children, so that these children are close to the normal values for age-appro­priate children or quite within the normal range. In other studies, however, only slight impro­ve­ments compared to routine treat­ment could be shown. The core symptoms of autism there­fore appear to be quite acces­sible to early treat­ment. Most of the evidence is avail­able for the ABA. However, the lower the inten­sity of treat­ment, the lower the effects. However, a minimum of required or meaningful treat­ment inten­sity cannot be speci­fied. No valid infor­ma­tion can be provided on the cost and cost-effec­ti­ve­ness of inten­sive early inter­ven­tions in children with autism.

We would like to thank the German agency for Health Tech­no­logy Assessment/DAHTA German agency for HTA DIMDI-German Insti­tute for medical docu­men­ta­tion and infor­ma­tion for the permis­sion to put this article on our website.

M.I.N.D. Institute scientists find important clues regarding learning deficits in children with autism

Highly tech­no­logy eye-tracking head­gear shows that autistic children look less at the face of the teaching person compared to normally deve­lo­ping children.

October 7, 2008

(SACRAMENTO, Cali­fornia, USA) A study by scien­tists at the UC Davis M.I.N.D. Insti­tute has found an important clue as to why children from the autistic spec­trum have diffi­culty imita­ting other people. They spend less time watching the face of the indi­vi­duals who are delaying new skills.

This study was conducted using high-tech­no­logy eye-tracking head equip­ment and soft­ware that accu­rately measured what a child was looking at during a lear­ning exer­cise. The rese­ar­chers deployed an actor to demons­trate a task on the computer screen.

We found that the children with autism were focused on the acti­vi­ties of the lead person and that they were much less likely than normally deve­lo­ping children to look at the protester’s face,” said Giacomo Vivanti, a scien­tist according to the doctoral thesis at the M.I.N.D. Insti­tute and the leading author. “The normally deve­lo­ping children may have looked at the face of the precurtain in order to obtain infor­ma­tion about what to do or how to do this appro­pria­tely; children with autism are less likely to seek this infor­ma­tion. This is an important finding because children with autism struggle to learn from others. Part of the solu­tion may lie here as to why this is so,” says Vivanti.

Imita­tion plays an important role in how children learn, but also how indi­vi­duals interact socially,” says M.I.N.D. Insti­tute scien­tist and lead study author Sally J. Rogers. She has studied impairment in imita­tion for more than 20 years. “This is a charac­te­ristic that we see as early as how it is possible to estab­lish the diagnosis of autism; and it’s one of the features that’s also present in slightly impaired adults,” Rogers says.

Limited imita­tion leads to addi­tional impairments in the sharing of feelings, in the imagi­nary play, in prag­matic commu­ni­ca­tion and in the under­stan­ding of emotional states of other persons. For years, scien­tists thought children with autism and similar disor­ders had diffi­culty lear­ning through imita­tion because they had a lack of motor skills, or because they paid no atten­tion to the exer­cise being performed. This current study excludes this hypo­thesis.

We now under­stand more about how the defi­cits in imita­tion come about; and we may there­fore, after addi­tional rese­arch, also address them in such a way that children with autism can be helped to develop a more natural reper­toire of beha­viors, “reports Rogers, a rese­ar­cher at UC Davis and professor of psychat­rics. And beha­vioral sciences.

In this latest study, published on the internet in June and will appear in the Journal of Expe­ri­mental Child Psycho­logy in November; 18 children aged 8–15 with high-unctio­ning autism were care­fully matched with 13 normally deve­lo­ping children. While wearing the special eye-tracking head set, the children were shown video clips that were between 7–19 seconds long. After watching the clips, the children made up the performed move­ments. The findings confirmed previous rese­arch that children with autism have diffi­culty with imita­tion exer­cises compared to the age-deve­lo­ping children. But it also became clear that children with autism, as well as other children, paid atten­tion to the acti­vi­ties demons­trated. This excluded the hypo­thesis of lack of atten­tion in rela­tion to tasks. “This finding is parti­cu­larly important,” Rogers says. “Now we can exclude this variable. We know that the children are looking at the tasks.”

Rese­ar­chers have also found that success­fully performing tasks of children with autism incre­ased when the time they had to look at them incre­ased; However, this was not related to the basic skills in motor skills; This ruled out the possi­bi­lity that a defi­ci­ency in motor dexterity could cause the effects in imita­tion.

Finally, the study showed that both groups of children turned their atten­tion from acti­vity to the precur­sout, however, the children with autism made this much less common.

According to Rogers, these findings suggest that imita­tion is not just a repeat of an act, but the under­stan­ding of the occa­sion for that acti­vity.

This infor­ma­tion is conveyed through our face,” she explains.

Rogers and Vivanti will continue to try to under­stand how this diffe­rence in looking at faces affects more clut­tered lear­ning and under­stan­ding.

We’re looking at how children look at feelings and inten­tions trans­mitted through the premier’s face. And we also look at how informing the faces by looking or not looking affects the under­stan­ding and imita­tion of the observed actions,” Vivanti says.

Based on these studies, Vivanti and Rogers hope they can one day develop studies desi­gned to show whether or not looking in faces is an important part of the copycat process. “It could be that people with autism might be better at reco­gni­zing feelings, they might start to mimic their role models quite natu­rally, as other indi­vi­duals do,” Rogers says. ” If it’s a matter of how to under­stand the infor­ma­tion from the face, then it provides you with a goal for inter­ven­tion. ”

The UC Davis M.I.N.D. Insti­tute, in Sacra­mento, Calif., was founded in 1998 as a unique inter­di­sci­pli­nary rese­arch center where parents, commu­nity boards, scien­tists, doctors and volun­teers work toge­ther to address autism and others Neuro­de­ve­lo­p­mental disor­ders.

More infor­ma­tion about the insti­tute can be found on the Internet: www​.ucdmc​.ucdavis​.edu/​m​i​n​d​i​n​s​t​i​t​u​te/ .

Thank You for Allowing this Article to be trans­lated and published to: Phyllis Brown, Senior Public Infor­ma­tion Officer, UC Davis M.I.N.D. Insti­tute.

Respon­sible for the trans­la­tion: Silke Johnson

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