“Why is it so hard to get services for my child with high functioning autism? The school is refusing to do an IEP because “he is not a special needs student” by their definition, yet he spends a lot of time in a resource room by himself to calm down from his meltdowns. I don’t get it! What am I missing here?”
Unfortunately, the authorities who decide on entitlement to services are usually unaware of the extent and significance of the challenges associated with High-Functioning Autism (HFA) and Asperger’s.
A solitary lifestyle, overall IQ usually within the normal range, and proficient verbal skills often mask outstanding deficits observed primarily in novel or otherwise socially demanding situations, which decreases the perception of the very salient needs for supportive intervention for the child.
Too many children with HFA and Asperger’s are diagnosed as learning disabled with eccentric features (a non-psychiatric diagnostic label that is much less effective in securing services, which saves money for the powers-to-be).
Active participation on the part of the therapist, together with moms and dads – and possibly an advocate – to forcefully pursue the child's eligibility for services is greatly needed in most cases. Only the squeaky wheel will get the grease. So parents need to learn how to “squeak” – loudly and persistently.
The treatment of HFA and Asperger’s is essentially supportive and symptomatic. Acquisition of basic skills in social interaction as well as in other areas of adaptive functioning should be encouraged. Associated conditions, such as depression and anxiety, should be treated.
Special educational services are often helpful. Also, supportive psychotherapy focused on depressive symptoms, problems of empathy, and social difficulties is helpful. Of course, none of this can get accomplished if the child is labeled “just a normal kid who misbehaves and acts a little strange.”
Resources for parents of children and teens on the autism spectrum:
• Anonymous said... Appeal to the district. If he has to be out of the regular classroom, he should have an IEP. Let me know if I can help! • Anonymous said... Don't give up! I've been fighting to get an IEP for my son since the 2nd grade. He is at the end of his 6th grade year and I just got one finalized for him. It shouldn't take this long though... I agree with the above comment - get an advocate. You can ask the school for one. Good luck! • Anonymous said... Escalate beyond the school to the trustees • Anonymous said... Gah. I got that too about my son in public school. But also from myself... I always thought, he's not all that severe; it felt dishonest to call him special needs when I see and know so many kids with bigger issues. But recently my son's teacher (on a private school) and I were celebrating that my son was finally sitting IN his desk to do his make-up work at the school after three weeks of meltdowns and a day of finally doing his work but on the floor. A lightbulb went off: this is special needs, celebrating an 11 year old using his desk. Back to his experience at public school, the school didn't want to qualify him as special needs, but they wanted him to have an aide to deal with his meltdowns. I pointed out that if he NEEDED an aide, then that's special needs. They were wrong, he didn't need an aide, but I was able to throw their hypocrisy at them, and that had some impact until we were able to get out of there. • Anonymous said... get services, wrap around and an advocate to go with you to the meeting. Look for a child therapist that specializes in this field If they are putting him in a class room many times a day by himself he needs help This can be considered neglect. And what are they saying to him when they put him here. The other thing is it being used as an escape so he doesn't have to deal or learn how to. Your child can learn they just think differently than others, and usually are way smarter than the adults. They are putting him there because they are not willing to deal with the situation or maybe they think that it is okay. It is not okay. My son knew at 4 years old he was different from all the other 15 kids in preschool. • Anonymous said... I am waiting for a meeting my son is 14. Any ideas on what i should be asking the school for in reguards of help ? • Anonymous said... I can relate to this, my 8yr old is also exactly the same and his meltdowns are so far and few in between that it further justifies their lack of support at our mainstream school. My husband and I have been self funding and seeking external (very expensive) therapies since my son was 2yrs old. His paediatrician is due to visit his school next month to have an indepth conference with the school faculty regarding the support he and I both are adamant he needs regardless of how "high functioning" he is. The paediatrician is also going to discuss with the school that he is ready to give my son a formal diagnosis of Social Pragmatic & Communication Disorder which will guarantee him a teacher's aid and extra support at school and he's going to make sure they get onto organising it asap. It's been a long road and my son does well with the outside school private tuition so we will continue with that regardless. Read up about Social Pragmatic & Communication Disorder, see if your son's Dr can help your son obtain extra support at school with it... For us it's looking as though this may just work. All the best, I know what you are going through... Keep hassling them and don't give in, the fact you still continue to ask questions even though "they" tell you "he's fine" is testament you're heading in the right direction. • Anonymous said... Ive been fighting since first grade. the IEP is listed under OHI (other health impaired not ASD (Autism Spectrum Disorder) sometimes its easier if its more vague. It depends on county. There are parent advocates in some counties that you can ask to attend the IEP meetings with you. They can advise you as to what accomodations your child might need. Call the school board and ask for the exceptional student dept (that's what we call it) then ask them about parent advocates or something like that. Good luck. I constantly have my sons modified as he gets older, or as he struggles in classes. • Anonymous said... My daughter was taken off her IEP because she started doing better grade wise, this is due to a wonderful teacher this year. After doing research, I found that she qualifies for a 504 Program. It is just like the IEP and provides the protection my daughter needs. • Anonymous said... Not sure where you are... I'm in Australia, my son is eight, in grade two. Last year he was tested through his school and rated at the high end for Aspergers = no funding. We have been very lucky in that his Teacher has been extra supportive, he had the same Teacher last year, a huge bonus getting him this year! My son finds it difficult with socialising at school and does not cope well with high contact sport. The last two years I've had him in karate for self defence as he was bullied at the beginning of his first two years of school. He was also doing indoor soccer for the last two years but most practices he would come away feeling frustrated, which then I had to help him work through. This year I decided to pull him from indoor soccer and put him in a swimming program = a happy, bouncy little boy after each practice. Some days there are no melt downs, some days there are. I made a sign he has to read at "melt down" times... "You are responsible for your behaviour, your choices and every result you get". This helps to remind him he is responsible for his actions, especially when he is on the defensive. It's a huge learning curve, especially when my hubby refuses to accept the findings. • Anonymous said... Welcome to reality • Anonymous said... wow my son just has aspergers traits, not enough for a diagnosis, sure we don't get free resources or money but the school still considers his needs and accommodates. * Anonymous said... My daughter also has a 504 plan but she also has medical issues as well so the 504 plan was a better choice over the IEP. With that said she has options in place "if" she needs to use them. She is a freshman in high school and has learned how to better "cope" with social situations. She also has a phone with her at all times and can text me if she needs to and then we make the decision if I am needed at school or not. When she was in elementary she did not have the 504 plan but the teachers were really good with her and helped her when needed. Maybe you can talk with the counselor and see if there is a program or place he can go to so he can "calm" down or talk with someone. My son has this type of option and he is not "special needs" but deals with bulling on a daily basis, this plan has only been in effect for a few weeks but has helped he cope. Good Luck! * Anonymous said... a charter school that sounded really good told me that they could not enroll my son unless I had his IEP modify so that he received no services. I told them so long!
* Anonymous said... Interesting. I applied at a new charter school that we liked for my son now in fourth grade. I was told we had to drop his IEP (or write it so that he received no services) in order to enroll there. He doesn't get a lot with his iep, mainly sensory breaks, extra time and some social skills training. I still think it's worth having and told the other school I wouldn't enroll him there if they didn't allow a kid with an iep.
Is public school not working so well for your child with Asperger's or High-Functioning Autism? Are you thinking about home-schooling instead? Watch this first!
Struggling with an Asperger's student? Click here for highly effective teaching strategies, specific to the Asperger's and HFA condition.
"How does one go about getting their child assessed for an autism spectrum disorder, and what is involved in the assessment? We have our suspicions and are thinking we should have our son tested."
A diagnosis of an autism spectrum disorder can be given by a psychologist, a child psychiatrist, a developmental pediatrician, or a child neurologist. Asperger’s and High Functioning Autism (HFA) involve delays and deviant patterns of behavior in multiple areas of functioning that often require the input of specialists with different areas of expertise, particularly overall developmental functioning, neuropsychological features, and behavioral status. Thus, the clinical assessment of children with Asperger’s and HFA is most effectively conducted by an experienced interdisciplinary team.
Let’s look at a few important points that should be made clear before we discuss the various areas of assessment…
First, most children with Asperger’s and HFA have average- to above average- levels of Full Scale IQ. As a result, they are often not thought of as in need for special programming. All too often, people view the “special needs” child as a person who is simply experiencing difficulties in behavior, social interaction, or in peer relationships. This is a true down-play of what is really going on. Asperger’s and HFA is a serious and debilitating developmental disorder impairing the child's capacity for socialization. It is NOT a transient or mild condition. Moms and dads need to be aware of the current lack of knowledge about Asperger’s and HFA, and the common confusions of use and abuse of the disorder currently prevailing in today's society.
Second, given the complexity of the disorder, the importance of developmental history, and the common difficulties in securing adequate services for kids on the autism spectrum, it is very important that moms and dads observe and participate in the assessment.
Third, assessment findings should be translated into a single, coherent view of the child (i.e., easily understood, detailed and concrete – with realistic recommendations). When writing their reports, specialists should strive to express the implications of their findings to the child's day-to-day adaptation, learning, and vocational training.
In the majority of cases, a comprehensive assessment will involve the following components: psychological assessment, neuropsychological assessment, psychiatric examination, history, and communication assessment.
Psychological Assessment—
This component attempts to establish the overall level of intellectual functioning, profiles of strengths and weaknesses, and style of learning. The specific areas to be examined and measured include:
academic achievement
adaptive functioning (e.g., degree of self-sufficiency in real-life situations)
neuropsychological functioning (e.g., problem-solving, concept formation, visual-perceptual skills, motor and psychomotor skills, memory, executive functions)
personality assessment (e.g., mood presentation, common preoccupations, compensatory strategies of adaptation)
Neuropsychological Assessment—
The neuropsychological assessment of children with Asperger’s and HFA involves certain procedures of specific interest. Whether or not a Verbal-Performance IQ discrepancy is obtained in intelligence testing, it is advisable to conduct a fairly comprehensive neuropsychological assessment including:
concept formation (both verbal and nonverbal)
executive functions
facial recognition
gestalt perception
measures of motor skills (e.g., coordination of the large muscles, manipulative skills, visual-motor coordination, visual-perceptual skills)
parts-whole relationships
spatial orientation
visual memory
A recommended protocol would include the measures used in the assessment of children with Nonverbal Learning Disabilities. Particular attention should be given to demonstrated or potential compensatory strategies (e.g., children with significant visual-spatial deficits may translate the task or mediate their responses by means of verbal strategies or verbal guidance, which may be important for educational programming).
Psychiatric Examination—
The psychiatric examination should include observations of the child during more and less structured periods (e.g., while interacting with the mother or father, while engaged in assessment by other members of the evaluation team). Specific areas for observation and inquiry include:
ability to intuit other's feelings
ability to infer other's intentions and beliefs
capacities for self-awareness
development of peer relationships and friendships
level of insight into social and behavioral problems
patterns of special interest and leisure time
perspective-taking
quality of attachment to family members
social and affective presentation
typical reactions in novel situations
Problem behaviors that are likely to interfere with remedial programming should be noted (e.g., marked aggression). The child's ability to understand ambiguous nonliteral communications (e.g., teasing and sarcasm) should be examined, because misunderstandings of such communications may elicit aggressive behaviors. Other areas of observation involve:
anxiety
coherence of thought
depression
panic attacks
presence of obsessions or compulsions
History—
A careful history should be obtained (e.g., information related to pregnancy and neonatal period, early development and characteristics of development, medical and family history). A review of previous records including previous evaluations should be performed. Also, several other specific areas should be directly examined because of their importance in the diagnosis of Asperger’s and HFA, including:
areas of special interest (e.g., favorite occupations, unusual skills, collections)
development of friendships
development of motor skills
emotional development
history of onset/recognition of the problems
language patterns
mood presentation
past and present problems in social interaction
patterns of attachment of family members
self-concept
social development
Communication Assessment—
The communication assessment attempts to obtain both quantitative and qualitative information regarding the various aspects of the child's communication skills. It should go beyond the testing of speech and formal language (e.g., vocabulary, articulation, sentence construction, comprehension), which are often areas of strength. The assessment should examine:
content, coherence, and contingency of conversation
nonliteral language (e.g., humor, metaphor, irony, absurdities)
nonverbal forms of communication (e.g., gestures, gaze)
pragmatics (e.g., adherence to typical rules of conversation, turn-taking, sensitivity to cues provided by the speaker)
prosody of speech (e.g., pitch, melody, volume, stress)
Asperger’s can be diagnosed through several different assessment tools, most of which are targeted toward kids and young adults (e.g., Australian Scale for Asperger's Syndrome, Asperger's Syndrome Diagnostic Scale, Childhood Autism Spectrum Test, Adult Asperger Assessment). Asperger's assessment tests are performed in conjunction with behavioral evaluations and analysis of intake information provided by moms and dads, educators, and the child himself or herself. These assessments help to ensure accuracy in diagnosing Asperger's so that future treatments and accommodations can be implemented.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
• Anonymous said... Getting through a school day without upset at kids teasing......Good day today.
• Anonymous said... I am new to this site and grateful for it
• Anonymous said... I ended up going to our Minister of Education to get help for my son as he is well above average in schooling, but because of his behaviour he was close to being suspended and the RBLT said she could not put anything in place as he didn't need it. The Minister got something's put in place, but we ended up changing schools and the RBLT at that school put in a socializing programme for him to teach him how to play with kids, and this was everyday during class time. What a difference it made, he was actually able to be in the playground at breaks.
• Anonymous said... Just having this epiphany myself this week. I've felt inappropriate thinking of my asperger son as special needs as his physical and intellectual abilities are fine. But when I found myself celebrating with his teacher that my 11 year old was sitting in a chair and doing his schoolwork... I was like yeah, duh, that's kinda special needs.
• Anonymous said... my 18 year old who has been attending a wonderful exclusionary school for his needs that are increasingly aspergers believes he needs to curse to get past his anger. I don't allow cursing. he wont consider other options also he persevered when he's agitated and that's when I tend to lose my cool. I practice disengagement but fear he feels abandoned and since he's adopted I might be inadvertently hurting him. any thoughts? thank you hope im not out of order here
• Anonymous said... My son is 3 with aspergers. And too is swearing, we have got most of the bad words out of his temper swearing. Now he only goes too bullshit+t. He says this when angry happy, even today he changed his name to Gordon bullshit+t. For a couple of hours and when I wouldn't say it. He got angry at me for not saying his new name. Its just a dealing mechanism. I also have asperges, and when I am really anxious, or very angry and defensive, I have a truckers mouth as well. Its just all about love and acceptence. He may acknowledge that you don't like it, but it also could be a eternal comfort for his brain too.
First, most children with Asperger’s and HFA have average- to above average- levels of Full Scale IQ. As a result, they are often not thought of as in need for special programming. All too often, people view the “special needs” child as a person who is simply experiencing difficulties in behavior, social interaction, or in peer relationships. This is a true down-play of what is really going on. Asperger’s and HFA is a serious and debilitating developmental disorder impairing the child's capacity for socialization. It is NOT a transient or mild condition. Moms and dads need to be aware of the current lack of knowledge about Asperger’s and HFA, and the common confusions of use and abuse of the disorder currently prevailing in today's society. 
