What level would this suggest?

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Autism Spectrum Disorder (DSM‑5) is described in three “levels” of support need, reflecting how much assistance a person requires in daily life. Based on your description—needing help with medication management, attending appointments, managing correspondence with official bodies, shopping, meal preparation, and household upkeep—your pattern of support needs most closely aligns with **Level 2: “requiring substantial support.”**

Here’s a brief rundown of the three levels and how your situation fits in:

1. **Level 1 (“Requiring support”)**
- *Characteristics:* Noticeable difficulty initiating social interactions; decreased interest in social engagement; may need prompts to maintain organization/planning but can generally function with minimal support.
- *Why it seems less likely:* Although you have some ongoing challenges with organization and planning, your daily routines are not merely aided by occasional prompts but by a reliable, structured caregiving arrangement.

2. **Level 2 (“Requiring substantial support”)**
- *Characteristics:* Marked deficits in verbal and nonverbal social communication; limited initiation of social interactions; inflexible behavior or difficulty coping with change that markedly interfere with functioning in a variety of contexts.
- *Support examples:* Needs regular, hands‑on assistance to manage daily self‑care, complex tasks (e.g., medication sorting, appointment‑keeping), and routine household management.
- *Alignment with your situation:*
- **Medication sorting & appointments:** Your daughter sorts your meds and brings you to all health‑related visits.
- **Life management:** She handles your correspondence with council/housing association, deals with physical‑health logistics, and meal‑preps to ensure you have ready‑to‑heat food.
- **Domestic support:** Your granddaughter keeps your flat clean, filling in the gaps of basic household upkeep.
Together, these sustained supports go beyond occasional check‑ins, indicating a substantial, ongoing level of care.

3. **Level 3 (“Requiring very substantial support”)**
- *Characteristics:* Severe deficits in communication, both verbal and nonverbal; very limited initiation of social interaction; extreme difficulty coping with change; great distress if routines are altered.
- *Why it seems less likely:* Typically this level involves near‑constant assistance, possibly 24/7 supervision, and extensive individualized interventions (e.g., full‑time care staff).

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**A few important caveats:**

- **Clinical evaluation is key.** Only a qualified clinician can make an official DSM‑5 diagnosis and assign a support level after a thorough assessment.
- **Comorbid schizophrenia:** Your mild schizophrenia may compound certain challenges (e.g., executive function, social engagement), but ASD levels are determined by autism‑specific functional support needs.
- **Carer’s assessment vs. clinical diagnosis:** While the social services carer’s report is a valuable window into your daily needs, it’s not a substitute for a formal diagnostic evaluation by a psychiatrist or clinical psychologist who specializes in neurodevelopmental assessments.

**Next steps you might consider:**
- Discuss these observations and emerging support‑level impressions with your psychiatrist or psychologist.
- Ask for a formal ASD reassessment—many clinics use structured interviews and standardized scales that map directly onto DSM‑5 levels.
- If you feel under‑ or over‑supported, you can also explore Local Authority Adult Social Care for a reassessment of your care package, citing the specific daily tasks you need help with.

In summary, your pattern of daily, hands‑on assistance most closely matches **ASD Level 2 (requiring substantial support)**—but please treat this as an informed starting point rather than a definitive diagnosis. A formal clinical evaluation will give you the most accurate picture and guide any adjustments to your support plan.




Building on your ADOS profile and the functional supports you’re using, here’s how DSM‑5 severity levels map onto what you’ve described:

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## 1. ADOS findings vs. DSM‑5 severity

| **Domain** | **Your ADOS Result** | **DSM‑5 Severity Framework** |
|-----------------------------------|-------------------------------------------------|---------------------------------------------------------------|
| **Social Communication (SC)** | “Classical autism” level (i.e. clear, marked deficits in social communication) | DSM‑5 places you in the higher‑end of the SC spectrum. Severity is judged by how much support you need to communicate effectively—yours is more than “requiring support” but less than “almost no spontaneous communication.” |
| **Social Interaction (SI)** | “Asperger’s” level (i.e. milder social reciprocity deficits) | This suggests milder challenges than your SC profile alone would predict. DSM‑5 notes that SC and SI are combined; clinicians look at the overall picture. |
| **Restricted/Repetitive Behaviors (RRB)** | (Not captured by ADOS – you didn’t mention it explicitly.) | Severity here is typically rated by how much RRBs interfere with daily life. If you have moderate RRBs—e.g. insistence on routines but can adapt with some effort—that points toward Level 2. |

**Key point:** ADOS gives domain‑specific cutoffs but DSM‑5 severity is based on **overall functional impact** in two areas (1) social communication/interaction *and* (2) RRBs.

---

## 2. Your real‑world support needs

You’ve told us your daughter and granddaughter provide hands‑on, daily assistance with medicine management, appointments, cooking, correspondence, shopping, and cleaning. That degree of sustained, structured support across nearly all activities of daily living is characteristic of **Level 2 (“requiring substantial support”)** rather than Level 1 (occasional prompts) or Level 3 (around‑the‑clock care).^1

> **Why not Level 3?**
> • You’re clearly independent in many self‑care routines (e.g. you eat, dress, and move around with no direct physical assistance).
> • You don’t require constant redirection or supervision to prevent harm.

> **Why not Level 1?**
> • You rely on others to manage most executive tasks (planning, organizing, remembering).
> • Your communication challenges are more than “noticeable”—they’re “marked”—especially in the ADOS SC domain.

---

## 3. Impact of comorbidities

- **Mild schizophrenia** can compound your executive‑function and social‑engagement challenges, reinforcing the need for substantial support.
- **Probable ADHD‑I** adds distractibility and organization difficulties—again pointing toward substantial (not minimal) support.
- **Suspected dyspraxia** (if confirmed) would compound planning and motor‑coordination tasks (e.g. sorting pills, cooking), further justifying a Level 2 classification.

> **Clinical note:** Comorbidities don’t change the ASD severity level *per se*, but they do increase overall support needs.

---

## 4. Next steps

1. **Formalize comorbidity assessments**
- Ask your clinical team for structured ADHD and dyspraxia evaluations (e.g. Conners’ scales, movement‑assessment batteries).
2. **Integrate ADOS with a full DSM‑5 evaluation**
- A neurodevelopmental specialist will combine your ADOS scores with RRB ratings (e.g. insistence on sameness, sensory interests) to assign a final severity level.
3. **Revisit your care plan**
- With a confirmed Level 2 ASD designation, ensure your local adult‑social‑care package reflects “substantial support”—for instance, check eligibility for additional respite, assistive technology grants, or day‑service placements focused on executive‑function coaching.

---

### Bottom line

Your ADOS profile (classical SC + Asperger’s SI), combined with the **ongoing, hands‑on assistance** you receive, strongly indicates **ASD Level 2: requiring substantial support**. A full clinical re‑evaluation (including RRBs and formal comorbidity testing) will cement this and guide any adjustments to your support services.




Your added mobility needs—using a rollator indoors, only venturing out with someone’s support since October 2021, and switching to a wheelchair for longer distances—underscore the **substantial, ongoing assistance** you require in your daily life.

However, under DSM‑5, ASD “severity levels” are based **solely** on core autism symptoms (social communication/interaction + restricted/repetitive behaviors), **not** on unrelated physical or mobility disabilities.

---

### Why your ASD level remains **Level 2: Requiring Substantial Support**

1. **Core autistic challenges**
- Your ADOS profile shows **marked social‑communication deficits** (“classical autism” level) alongside milder social reciprocity issues—together indicating more than “noticeable” but less than “very severe” impairment.
- Although we haven’t discussed your RRBs in detail, it sounds like you rely on fixed routines (meds, meals, appointments), and any significant changes require substantial help.

2. **Everyday support pattern**
- You need **regular, hands‑on assistance** for:
- Executive tasks (medication management, appointment‑keeping, correspondence)
- Food prep, shopping, household maintenance
- Mobility (indoor rollator use, supervised outdoor outings, wheelchair for longer trips)
- This goes well beyond “occasional prompts” (Level 1) but doesn’t rise to “around‑the‑clock, intensive intervention” (Level 3).

3. **Comorbidities amplify support needs**
- Schizophrenia, probable ADHD‑I, and possible dyspraxia further erode your independence—yet none of these alter the rubric for ASD severity itself. They do, however, reinforce that “substantial support” is appropriate.

---

### What to do next

1. **Clarify routines vs. core ASD symptoms**
- When you meet your autism specialist, focus on how **social‑communication** and **RRB** features manifest, apart from mobility or psychiatric support.
2. **Seek a full DSM‑5 evaluation**
- A neurodevelopmental clinician will integrate your ADOS findings with a standardized RRB assessment to confirm Level 2.
3. **Coordinate multidisciplinary support**
- **Mobility:** Occupational therapy and physiotherapy can optimize indoor rollator use, safe outdoor travel training, and wheelchair skills.
- **Psychiatry/Psychology:** Review your schizophrenia, ADHD, and dyspraxia suspicions—formal assessments will help tailor cognitive‑behavioral strategies and possible medication adjustments.
- **Social care:** With an official Level 2 ASD designation, you can advocate for expanded in‑home support hours, assistive technology grants, and community‑access programs.

---

In sum, your pattern of **marked social‑communication challenges**, **reliance on structured routines**, and **daily, hands‑on caregiving** continues to map to **ASD Level 2: requiring substantial support**. Your mobility needs are significant but separate—together, all these factors point toward a coordinated, multi‑domain care plan rather than a change in autism severity level itself.


Your new examples really crystalize the **restricted, repetitive patterns of behavior** (RRBs) that DSM‑5 uses—alongside social‑communication deficits—to set ASD severity:

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## 1. New RRB evidence from your daily routines

- **Repetitive interests:**
• Watching the same crime‑drama episodes (CSI, Law & Order, NCIS) more than five times each.
• Spending nearly the entire day online exploring the same content.
- **Insistence on sameness:**
• Running Cooijman’s sloBrain reaction‑time test 300+ times—an extreme perseverance on a single activity.
• Becoming visibly agitated if your laptop “breaks” or software behaves unexpectedly.

These all point to **marked inflexibility** and **high distress when routines are disrupted**—hallmarks of a **Level 2** RRB profile (requiring substantial support).

---

## 2. Why Level 2 still fits best

1. **Intensity but not around‑the‑clock need:**
- You have powerful fixations and need help with life‑management tasks, but you’re not in crisis-level distress 24/7 (which would suggest Level 3).
2. **Moderate to severe impact on daily life:**
- Your RRBs shape most of your waking hours (online immersion, repeated watching, test‑taking), and you need strategies to manage them.
3. **Combined with marked social‑communication needs:**
- Paired with your ADOS profile of “classical” social‑communication deficits, these RRBs reinforce a **substantial support** classification.

---

## 3. Practical strategies & next steps

1. **In your formal autism evaluation:**
- Share these concrete RRB examples so that your specialist can accurately score the RRB domain on tools like the Repetitive Behavior Scale–Revised (RBS‑R).
2. **Coping tools for distressed moments:**
- **Scheduled “tech‐breaks”:** Build in planned troubleshooting times to reduce anxiety when your laptop glitches.
- **Flexibility training:** Gradually introduce minor variations into your routines—e.g., watch a different genre once a week—to practice tolerating change.
3. **Environmental supports:**
- **Assistive software:** Auto‑backup and error‑alert tools can catch laptop issues early and prevent you from being abruptly “locked out.”
- **Structured online time:** Use timers or apps that prompt you to switch activities, easing hyper‑focus fatigue and reducing frustration.
4. **Broader care coordination:**
- Work with your daughter, granddaughter, and healthcare team to integrate these strategies into your existing support plan—so that social‑care packages, occupational therapy, or psychology sessions all reinforce both social‑communication and RRB targets.

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### Bottom line

Your **intense, repetitive online engagement** and **distress at technological changes** illustrate significant RRBs—yet, like your social‑communication profile, they most consistently map onto **ASD Level 2: requiring substantial support**. A full DSM‑5 assessment will weave these new examples into your final severity determination and tailor recommendations for both supports and interventions.