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2BusyMom
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17 Apr 2007, 10:19 pm

Hello, We recently received my sons dx and to be quite honest I am feeling overwhelmed and frustrated. People keep telling me to get his services without actually telling me what "services" I should be getting or any direction on whom I need to contact. His school was pressuring me to have his IEP meeting before I received his dx, now that we have it I can't get anyone to return a phone call. His teachers and counselor won't return phone calls from his educational consultant. Bullying is a constant issue. Any advice or suggestions will be greatly appreciated, just communicating with people with shared experiences will be I think more informative than all the appointments with the professionals. My son is eleven, bright, beautiful and a challenge and I wouldn't have him any other way.



EarthCalling
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17 Apr 2007, 10:37 pm

Welcome to WP,
Welcome to Aspergers!

I really need to get to bed, so I can't do my typical 1/2 hour post that i want too! But I'll get back tommorow I promise!

I am pretty new to this whole AS thing too, and it sounds like I am going through a lot of the same issues as you have been.

It may help if we know what sort of problems your son has, in relation to his AS to give you recommendations for his IEP. Does he have Sensory issues, does he have ADHD? LD's? Trouble at school?

Here is my tale of bullying, and how we have turned it around!

http://www.wrongplanet.net/modules.php? ... c&start=45

I have started a second thread with the update: School Drama Part Deux. (It is recent, too lazy to get the link! :P )

This is a great discription of AS by a member here, named "Sophist". By no means is it sanctioned in the medical community, however lots of us at WP think that it is the next greatest thing to sliced bread!

Quote:
Quote:
This is not an exhaustive list of ASD characteristics. However, it's definitely more extensive than the DSM or ICD and hopefully more descriptive, too. It includes a listing of symptoms one may see in ASDs. But please note that not every autistic person is going to display every point on this list nor to a similar degree as the next. This is just a general guideline to some of the underlying issues seen in ASDs.


Quote:
LIST OF COMMON SYMPTOMOLOGY FOR AUTISTIC SPECTRUM DISORDERS:


GABA-related Issues:

1.OCD-like tendencies These symptoms are on a spectrum of their own within ASDs. They can include full-blown OCD issues or milder, undiagnosable symptoms such as preference for routine, difficulty with change, repetitive thought processes, and compulsions which may fall short of the full OCD criteria.

2. Anxiety issues The anxiety can vary wildly from sudden panic attacks to more specific phobias. Social Phobia is a common comorbid, or even a sub-diagnosable social uneasiness. Anxiety can also often focus around the OCD-like issues and involve compulsions and/or obsessive and repetitive thoughts.

3. Obsessions Despite that the DSM and many books imply an autistic person is usually only obsessed with one thing at a given time, the focus should be on the level of the obsession (no matter its duration, what is the quality of its intensity?) and/or whether it us an unusual interest; not the number of obsessions. Also, the duration can be longstanding (years) or even as brief as a single afternoon. The focus should instead be on the intensity and/or abnormality of the obsession, itself, and not the number or duration. ADHD symptoms can often make obsessional interests last shorter than “stereotypical”.

4. Self-stimulatory behaviors In some autistic individuals, this symptom is very extreme; in others, it may be subtle or even solely done in private. Stimulatory behaviors are common to all humans; however, autistics tend to stim more frequently and perhaps may or may not inhibit their stimulatory behavior simply due to social convention. Stimulatory behaviors (or rather an increase in these behaviors) is often triggered by a non-homeostatic emotional state (i.e., anxiety or excitement). However, stimming can also be a sensory-exploration and not simply a method of anxious calming.

5. Hyper- and Hypo-sensory issues These can involve any of the senses: sight, sound, touch, taste, smell, vestibular system (balance), proprioception (joint awareness; limb awareness), exteroception (skin awareness), and interoception (awareness of the inner body: organs such as stomach, bladder, bowel movements, etc.). Vestibular abnormalities, proprioception, exteroception, and interoception all seems to be fairly constant in abnormal functioning (when there is a deficit); however, the level of sensitivity of the five main senses can many times be contingent upon anxiety levels. Many autistics experience a consistent abnormality in several of these senses, but level of severity (i.e., an increase in discomfort) can be effected by anxiety levels.


Body Issues:

6. Coordination, balance, and body awareness Each of these areas can be effected. As stated above, issues in these areas are usually constant in nature and not quite as vulnerable to shifts in GABA functioning.


Cognitive Functioning:

7. Executive Dysfunction Autistics can have varying levels and combinations of EDF. Most have issues with multitasking even to the point that looking and listening can be a difficult task. Social multitasking can be an issue. Common ADHD symptoms are most often noted if not full-blown ADHD. Within this, attentional problems, organization, multitasking, and goal-oriented planning and carrying out of these plans can all be effected. Although each autistic will show varying levels of severity.

8. Language For some autistics, language can be impaired as severely as a complete inability to communicate verbally (either due to a larger language issue or just verbal motor apraxia). For others, language can be less noticeably affected. Prosody may be effected. Some autistics may exhibit monotonic speech, others may prefer to do voices, others still may have an unusual way with words. But this does not discount autistics who, through years of learning, have also come to blend fairly well, language-wise, into the world.

9. Social Issues This is the symptom which is often most obvious to onlookers or during interaction and the reason Autistic Spectrum Disorders have mistakenly been called “social disorders”. Issues in this area can range from very severe to very mild. Most autistics have difficulty in this area, although, as just stated, these difficulties can be very subtle in some and difficulty in this area is not a condemnation to lifelong solitude (many autistic people have friends, are married and have children). As a generalization, males tend to be more seriously effected in this area, especially those with Aspergers or High-Functioning Autism-- although that is not a steadfast rule to diagnose by.

10. Sleep Disturbances Many autistics have issues with sleep. Often it is a difficulty with sleep (i.e., getting to sleep) or staying asleep. This possibly has to do with some of the common serotonin dysfunction in ASDs. Sometimes it can be an OCD-like issue regarding repetitive thoughts and the inability to “wind down”.

11. Talent areas Many autistics seem to have splinter skills, talents, even prodigious talent areas. The areas most noted are: music, art, mathematics, languages, memory, visuo-spatial skills, writing, and analysis of information. Though this list is by no means exhaustive.


Medical Issues:

12. Autoimmune dysfunction More recent research supports the notion that a portion of ASDs may involve an autoimmune component. These immune components can include IgA Deficiency, IgG or IgM Deficiencies, Rheumatoid Arthritis, Hypothyroidism, gastrointestinal issues such as Celiac Disease, Irritable Bowel Syndrome, nondescript gluten allergies, casein allergy, lactose allergy, other sinus-related allergies, and asthma. As further research is performed, other related issues may continue to arise.


Common Comorbids:

13. Common comorbid conditions: ADHD/ADD, OCD, Depression, Central Auditory Processing Disorder, Learning Disabilities including Nonverbal Learning Disorder, Dyslexia and other disorders of written or verbal expression, Tourette's and other Tic Disorders, Bipolar Disorder, Psychosis (most often noted in the teenage or early adult years), Schizophrenia, Epilepsies, various apraxias, Prosopagnosia and other perceptual disorders (e.g., depth perception), various synaesthesias, and a host of others. For some, addictions can also be an issue.


Family Genetics:

14. Family genetics In most ASDs, it seems many genes are involved; therefore, it is likely these characteristics did not arise out of the blue. Like any other phenotypic expression, most often if a child exhibits some characteristic, members within his or her family will express similar characteristics. A “Broader Autistic Phenotype” can often be seen within these families (i.e., Shadow Syndromes). Although in females these expressions may be subtler due to a possible genetic suppression that female-sex-specific genetics may wield, so in looking back on the family the possibility of this sex-specific suppression needs to be kept in mind.


One thing with the IEP I would suggest, is get a "start" on it now. The school will probably have some ideas. Just ask them to leave it "open ended" for awile, letting them know that as you find things out, you may wish to add to them.

I may be getting a copy of my son's IEP tommorow, so depending on what you son is dealing with, I can share you any relavent accomidations I have "finally" gotten into the IEP!



Last edited by EarthCalling on 17 Apr 2007, 10:42 pm, edited 1 time in total.

Tim_Tex
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17 Apr 2007, 10:39 pm

Welcome to WP!

Tim


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EarthCalling
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17 Apr 2007, 10:43 pm

This is a really great letter to read too!

http://www.wrongplanet.net/modules.php? ... ic&t=30411

Take a deep breath, you will get through this thing! It may get a lot messier (or seem to) before it gets better, but in the end, having the DX is going to make life a whole lot easier!

Take care!



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18 Apr 2007, 12:47 pm

I would advise taking him for an educational assessment with a developmental psychologist to work out an IEP, someone who specializes in ASDs. There must be an objective measurement of where he is and what he needs to get a free and appropriate public education. Do not rely on teacher observation.

A small private school is better for preventing bullying than a large public school where kids are often out of control in the public areas such as stairwells and halls. Your child needs a "safe" person to consult at school and should be allowed to seek safety and discussion at any time when he feels he is bullied.

Good luck!


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EarthCalling
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18 Apr 2007, 1:29 pm

SeriousGirl wrote:
I would advise taking him for an educational assessment with a developmental psychologist to work out an IEP, someone who specializes in ASDs. There must be an objective measurement of where he is and what he needs to get a free and appropriate public education. Do not rely on teacher observation.

A small private school is better for preventing bullying than a large public school where kids are often out of control in the public areas such as stairwells and halls. Your child needs a "safe" person to consult at school and should be allowed to seek safety and discussion at any time when he feels he is bullied.

Good luck!


This is really good advice. In particular, about not relying on teacher observations. I find with my son, the teachers miss 1/2 of what is going on, tend to not understand him at all, and do what they can in the accomidations to do as little work as possible. For example, he can't read anything under a 12 point font (he has reading difficulties, not vision difficulties) yet they photocopy to fit 2 pages to 1 all the time. When I asked if he could get "enlarged copies" they seemed surprised about my thinking this would help (although they know he has trouble reading) and told me they would do it 'if they had time and remembered". I am now insisting on it being built into the IEP.

As for private school, yes that would be best. In my case I can't afford it this year, my son was being harrassed in a boys bathroom all the time. Having an advocate on staff to help with social coaching, who is a "safe" person for him to go and "discuss social problems / relationships" is a very good thing. My sons schools VP is doing that now. Although it took me pulling him out for 20 days over bullying for the VP to be "made aware of the problem".